ME/CFS Research: Photo Diary (Pre Lockdown and During Lockdown)

Not long ago, I volunteered for a research study into ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) and part of it involved keeping a photo diary as a visual representation for how my life is affected by my CFS. Obviously my life before the pandemic and my life now are quite different and so the researcher asked me to include pre-pandemic photos as well, to ensure that both experiences were recorded for the study. The collection of photos (and descriptions) I sent her was very long but I thought I’d do an abridged version to post here because it was a really interesting exercise.

(It’s worth noting that this was put together before I started back at university, hence why there aren’t any current references to classes or assignments.)


PRE-LOCKDOWN

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1. During my BA, I frequently took naps in quiet corners of my university between classes and then at my best friend’s flat when he moved onto the same street as the university. I found the commuting exhausting and the classes were long (some of them three hours) and took a lot of concentration. By the end of the semester, I was often really struggling to wake up to go back for the next class. A few times, I slept straight through both my alarm and my class. Fortunately that only happened a couple of times!

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2. I’m currently doing a Masters Degree in songwriting part time and pre-lockdown, I’d go up to London usually once or twice a week for lectures, workshops, and cowriting sessions. This is an example of one of the assignments we had during the first module, which was called Creative Process.

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3. Because living alone would be too much for me – I wouldn’t have the energy to look after myself, let alone do anything more – I commute to university (pre-pandemic anyway), involving lots of underground travel and multiple train journeys a week, something that I find exhausting. This is one of the reasons I chose to do my Masters part time because it reduced the amount of travelling and therefore allowed me to spend more energy on the course/work rather than on travelling.

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4. At the end of any day that involves hard work or anxiety, I’m utterly exhausted and usually end up horizontal on the sofa or going to bed as soon as I get home from wherever I am. In this instance, I’d just done the assessment presentation for the first module of my Masters – which I’d been incredibly anxious about – and was completely exhausted. Plus the day had involved practicing it in the morning as well as travelling to London and back. I was so tired that I could barely stay awake long enough to eat dinner before going to bed.

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5. I spent most of my days out of uni on the sofa, working on music, my mental health blog, or catching up with my diary, a favourite movie or TV show on in the background because I work better with background noise. I’m usually joined by a cat or two.

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6. As a singersongwriter, I try to perform as often as I can, both in terms of opportunity and having the energy (I once played three gigs in three days after which I could barely function for over a week because I’d just used up so much physical, mental, and emotional energy). That’s not a common problem – managing my energy around the amount of gigs – as there aren’t a huge number of opportunities with so many aspiring singers in the two cities I perform in, London and Brighton. I love performing. It’s the place I most feel myself, especially if I’m singing songs that I’ve written. I don’t feel any fatigue while I’m performing – I’m feeling so much joy that it’s like I’m flying – and I don’t feel any fatigue until the adrenaline wears off, anywhere between thirty minutes and several hours later.

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7. Since getting an Autism Spectrum Disorder diagnosis, I’ve been able to get access to disabled seats at concerts, which does (in certain ways) improve my concert experience. It can be more stressful and it can make no difference at all but at the very least, it makes me feel better. I am in the disabled section and therefore no one can judge me or think that I don’t deserve to be at the show because I’m not dancing around, not ‘enjoying myself enough.’ That makes me feel more able to sit as I need to, which does make the concert experience easier on me and my body. Having said that, I’m not always so sensible out of sheer enthusiasm.

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8. Before the pandemic, my best friend, Richard, and I had almost weekly writing and production sessions. My current EP was made almost entirely by the two of us in various rooms in the various places we’ve lived in over the last few years. These sessions are so fun and invigorating and even when it’s a struggle to find the right words or get the production to sound exactly how I want it to sound, it always feels right. I often feel very drained afterwards because it involves a lot of concentration and communication and we often work for four hours or more at a time. We have had sessions that last all day where I’m barely coherent by the end.

SINCE LOCKDOWN

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1. We have five cats in the house and I’ve been spending a lot of time with them. They’ve always been really good for my anxiety – probably because they are so mindful and live so fully in the moment – but they’ve been an extra comfort during these stressful times. I always try to get a good cuddle in the evenings since I get particularly anxious before bed because I’ve been sleeping so badly and having lots of nightmares during lockdown.

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2. I generally drink at least two Red Bulls a day to keep myself awake and somewhat alert, although I don’t think they work as well as they used to. I’m sleepy all the time, but whether that’s from the CFS or the side effects of my anti-depressants or both, I don’t know. I hate feeling like I need to drink it and I worry about the effects on my health but it’s currently the only way I can stay awake for at least most of the day. My Mum and I are investigating other options, or we were until the pandemic brought everything to halt. We haven’t given up though.

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3. This is my usual day-to-day view at the moment. I have a desk designed for bed or sofa use so that I can work from the sofa, which is more comfortable for me than working at my desk since I’ve been have problems with pain during lockdown (I’ve been referred to various hospital departments but I’m still waiting for the appointments). I’m usually working on my laptop – on my mental health blog, on my diary, on music stuff, etc – and there’s usually a cat draped over me.

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4. I usually have the TV on in the background because I seem to be more productive with familiar background noise, like a familiar TV show or movie. But I’ve also been watching new things during lockdown, both to escape from all of the stress around the pandemic but also as inspiration for my music as not much is happening in my personal life to draw from for songs. This is the very last episode of Agents of Shield, my favourite TV show and I was hugely sad to see it end although the ending was as perfect as the end of something you love can be.

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5. Since face-to-face writing sessions aren’t safe at this current time, I’ve been doing all of my writing sessions via Zoom. I’m currently doing about two a week, mostly with my writing partner, Richard. We alternate sessions: one on my songs and then one on his songs and so on. It’s harder work and not quite as fun or productive as a normal pre-pandemic session (who would’ve thought that not being able to point at something would trip up the creative process?) but it allows us to keep creating, which I’m grateful for. I’m always careful not to plan anything too difficult afterwards because these sessions are really draining and after about four hours, my ability to concentrate starts to fade.

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6. I’ve been playing a lot of piano during lockdown. It distracts me from all that’s going on, I want to improve my skills, and I just genuinely love playing, especially in the lower octaves. I find them very soothing. I can play for hours without noticing the passing time; it’s lovely. Playing and singing for hours is, of course, tiring but it’s worth it because I get so much enjoyment out of it.

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7. Because of my fatigue, I spend a lot of time on the sofa, which can get boring and frustrating, but it’s not so bad when I have my Mum (she’s self-employed, primarily working from home – especially now) and the cats around.

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8. Most days consist of sitting on the sofa, working on my laptop. I’m writing a lot of posts for my mental health blog at the moment, preparing for when university starts again and I have less time to write. My Mum often does emails similarly, keeping me company even if we aren’t actively engaging with each other.


So that’s my condensed photo diary for the study. There are, of course, other areas of my life and other areas of my life that my CFS affects, like food and exercise but I don’t have any photos relating to those. For example, swimming is my main form of exercise but pre-pandemic I wouldn’t take my phone further than the locker room and since lockdown began, I’ve been struggling to find a way to swim that feels safe. I may have found one but I’m trying not to get too excited: I’ve missed it so much and I’m so desperate to get back to it, for my physical health, my mental health, and my relationship with my body. I was also reluctant to include other people; my exception was Richard because our work and social media presence are so intertwined. So there are obviously gaps but I tried my best to give an overview. Hopefully it will be a useful contribution to the research.

The Empty Semester of My Masters – The Other Side

Back in June, I made a post about what had been my plans for the empty semester of my Masters and how I’d adjusted those plans according to the pandemic and subsequent lockdown. I was still hopeful that I could get a lot done in the time before my next semester started but the pandemic had a massive effect on my mental health and therefore my productivity so it took me a long time to gather myself enough to do anything even vaguely productive. So while, in pre-pandemic times, this list of completed goals probably would’ve felt disappointing, I’m trying to shed those expectations and be proud of what I’ve achieved considering the current circumstances.


MANAGED TO DO:

  • Sort through my clothes – I actually did this twice because I know that I get decision fatigue and end up keeping things that I don’t want because that’s the easier option. So I did a second sort through, reducing my wardrobe further. There’s still more than I’d like to get rid of but I feel like I made a serious dent in what felt like a pretty overwhelming situation.
  • Watched some of the things on my To Watch list – For a while, I only felt able to watch familiar things because it didn’t feel like there was the space in my brain for new stories or characters but eventually a few things started to catch my eye and it turned into a really good method of escaping all my anxiety about the current situation. I’ve also been watching quite different things, which has been fun. Plus, it’s a great source of inspiration while not much is happening in my personal life.
  • Improve my piano skills – I’ve spent a lot of time playing piano during this unstructured time and not only has it been really fun, I have actually improved. For a long time, I couldn’t hear or see any improvement but recently, I’ve been able to do things or pick up things much quicker and much more easily and that’s really exciting, even if there is still so much more to learn. To be fair, it’s not like that isn’t a universal fact.
  • Music Theory lessons – These didn’t even up happening the way I thought they would but I’ve spent some solid time working on my theory in the hope that it will make the upcoming Musical Language module less stressful and more fun.
  • Shot a music video – Despite the current circumstances, somehow Richard Sanderson and I managed to come up with a safe way to make a music video for ‘Back To Life‘ (from concept, to planning, to execution). It was actually fun, despite the high levels of anxiety I was experiencing. I hadn’t thought we’d be able to do it but somehow we did and I’m really proud of the result.
  • Get caught up with my photo albums – Despite the death of my computer, setting up a new one, reorganising my entire photo library, setting up the albums on the computer, and choosing photos for the eighteen months I was behind by, I somehow managed to get my photo albums up to date. It was a massive job, a much bigger one than I’d anticipated, so to have done it feels like a really big achievement, especially given how long I’ve been wanting to do it.
  • Start coming up with ideas for my Masters final project – As I said in the original post, the project isn’t for several months still but I wanted time to find a concept I could really engage with. I’ve jotted down a list of potential ideas (which I do have to find as it’s apparently wandered off…) and spoken to one of my tutors about it. He was really enthusiastic about the ones I mentioned so I feel like I’m off to a good start.
  • See a meteor shower – Me and my Mum drove out of the city and lay in a field to watch the Perseids meteor shower in August. It wasn’t the best meteor shower I’ve ever seen but we saw a handful of fairly decent shooting stars and it was a really clear night so just looking up at all the stars was a beautiful, pretty profound experience.
  • Catch up with my friends – Obviously when I set this goal, I’d imagined hanging out at people’s houses, movies nights, going to the beach, and so on. But then the pandemic happened (or more specifically, began…) and none of that was possible. Considering the amount of anxiety I’ve been dealing with, I think I’ve done an okay job of staying in touch with my friends, doing video calls and Netflix parties. Since the restrictions have eased a bit, I’ve seen a couple of friends too (socially distanced, of course), which has been really nice since I do find the constant communicating via screens exhausting.
  • Write new songs/work on old songs – I haven’t been as productive as I would’ve liked to be during this period but then my creativity is always negatively affected when I’m struggling with my mental health. But I’m trying to remember that I’ve done the best I can. At no point did I give up (beyond taking a break to avoid unnecessary distress) and when I couldn’t directly write songs, I worked on surrounding areas, like production or chord progressions and so on.
  • Have as many cowriting sessions as possible – I’d planned to do as many cowrites as possible, with as many people as possible, and while writing sessions have been possible via platforms like Zoom, I must admit I find it much more difficult to be creative and collaborative when I’m not in the same room as my cowriter. That doesn’t mean it’s not possible and I’m pleased with what I have managed to do but doing it this way has meant that I haven’t done nearly as many sessions as I’d hoped, especially as I have found Zoom sessions with less than familiar people harder to do than spending time with less than familiar people. If that makes sense.

IN PROCESS:

  • Catch up with my diary – I’d really hoped to have caught up with the diary I was behind on and then aborted when lockdown began, wanting to document this surreal experience in real time. I’ve been trying to catch up alongside everything else but I’m still behind and with everything going on at the moment, I’m behind in the current diary too. So when I start university again, I’m going to be trying to write three diaries at once, which feels very stressful. I’m not sure what I’m going to do about that but I’m going to have to figure it out because, if I haven’t said it before, OCD’s a bitch.
  • Update my songwriting book – Initially I made quite a lot of progress, writing up a decent amount of my more recent songs, but then I realised that I’d somehow left out a significant number of songs. That was very frustrating. And since then, I haven’t been quite sure what to do. I hate the idea of having them out of order but I’m also reluctant to add to my workload by making the decision
  • Sort out my bedroom – I’ve made a lot of progress over the last several months and it looks and feels so much better but I’ve been waiting for a couple of sets of shelves to arrive to help me better organise all the ‘loose ends’ of my stuff, if that makes sense. There’s just still a lot of bits and pieces around that don’t have their own space. I think that, once that happens and once all those things are a bit more organised, I’ll feel like most of the work is done. I’m looking forward to that.
  • Create my studio space – Again, I’ve made a start. I don’t have all the equipment I’d ideally want. For example, I wish I had some better speakers. But I’ve set up the equipment I do have, although it’s still a bit trial and error when it comes to the most effective set up. I’m still not super confident when it comes to all of this but I’m learning all the time. So we’re getting there, step by step.

COULDN’T DO:

  • Mental Health Awareness assemblies – Obviously these didn’t happen as the schools were closed when Mental Health Awareness Week was happening.
  • See Waitress The Musical again – This wasn’t possible as the show’s run closed during lockdown. I think it’s so sad that they didn’t get the finish. The show closed after Sara Bareilles’ last show so she and Gavin Creel (who played the male lead) had their closure but I’m sure Lucie Jones and David Hunter were really looking forward to coming back. Plus the rest of the cast must’ve been sad to see the show end with so little warning. They’d earned the chance to celebrate the incredible show they put on and the amazing run they had and it’s heartbreaking that they haven’t been able to do that.
  • Concerts – Concerts are only continuing to be rescheduled and even though some socially distanced shows are happening, I’m not at all convinced that it’s safe yet. I miss them so much but I can’t imagine feeling safe in that sort of environment for a really long time.
  • London gigs – Again, I’ve had a couple of booked gigs rescheduled multiple times but then it’s so hard to make concrete plans when we have no idea what the even near future holds. So I’m just trying to take things as they come, make responsible decisions, and not worry too much.
  • Get back to swimming regularly – Obviously for a long time the gyms were closed. When they opened up again, I went to see what their precautions were like but I really didn’t feel safe. The gym have been great about trying to make it easier for me to access their facilities as a disabled person but I’m still not completely convinced. We’re continuing to try to make swimming a possibility and maybe now that so many people are back in school, there will be more periods with less people. We’ll keep trying. I really miss it.
  • Improve my guitar skills – As I’ve already said, it took a long time for me to manage anything beyond staring at the TV in a perpetual state of panic and then, just as I started to feel capable of doing things, I developed awful pain in my arms, from my shoulders to my fingertips. Sometimes it was sharp, shooting pains, sometimes it was a deep ache, and sometimes I’d wake up to find my fingers completely numb. That’s been going on for most of this ‘semester,’ although it has started to improve recently. I still have a specialist doctors appointment at some point to assess the problem so hopefully I’ll be back to playing guitar soon.
  • Read some books from my To Read List – My ongoing anxiety has done a number on my concentration, particularly when it comes to reading. I’ll try to read a book, only to realise that I’ve read several pages and have no memory of what they said. I miss it and I am worried about what will happen when I get back to uni work but that’s the situation as it is at the moment. I’m talking to my Psychiatrist about it at my next appointment.
  • EP Gig – Since my timeline for the Honest EP has been pretty flexible, I wasn’t sure when the last single would be released and when therefore when we’d have the gig to celebrate the EP’s completion. As it’s turned out, the final single isn’t out yet so that’s not something I would’ve had to worry about, even if we had been able to put on events.
  • Start learning the Kalimba – Just as I’d managed to wrestle my motivation towards the Kalimba, I discovered that there was a problem with the one I’d bought and so won’t be able to start learning it before university starts again but I do still really want to learn. So I’m just going to have to reschedule that to a later date.

DIDN’T MANAGE TO DO:

  • Create a space to make YouTube content – This wasn’t hugely high on my list of priorities so it doesn’t surprise me that it’s one of the things to fall by the wayside. Plus, I haven’t completely finished the practical elements of my room so I think it’s something I can pursue without too much difficulty once that’s done.
  • Take some classes on Skillshare – I’ve struggled with my concentration throughout lockdown but most especially when trying to do things that involve absorbing new material so I didn’t manage to do much extra curricular learning. I managed a few TED Talks and read articles but I haven’t managed any in depth study like taking classes on Skillshare.

So, as I said at the beginning of the post, I’ve been trying to realign my expectations as to what has been possible during this time, based on the lockdown restrictions and my fluctuating mental state. With everything so uncertain, it was impossible to know what I’d achieve. Looking at this list now, I’m proud of myself. For the most part. And in the moments when I feel frustrated or disappointed, I acknowledge those feelings, let them have their space, and then try and let them go. I don’t always succeed but I try. Because, given everything going on, I think what I managed to do – especially looking back at how I was (or wasn’t) functioning at the beginning of lockdown – is something to be proud of. And when I can’t feel proud, I practice proud.

Now, on to the next semester.

Mourning A Public Figure

Last week was the two year anniversary of Claire Wineland’s death. She was a twenty one year old activist, raising awareness around Cystic Fibrosis and founding Claire’s Place Foundation to support children with Cystic Fibrosis and their families. She spoke at many conferences (including TEDx and the International Respiratory Convention and Exhibition) and posted multiple videos on YouTube, talking about her illness but also her life and her thoughts on various subjects.

In 2018, she went into hospital for a double lung transplant. I remember watching the Instagram Live where she announced that she’d received the call as she dashed around her home, gathering everything she needed. It was so exciting and I was so happy for her. She had the surgery and everything seemed to be going well. But then she had a stroke and a week later, according to her advanced directive, was taken off life support. She died on the 2nd September 2018 at the age of twenty one. I wrote several posts about her, including one in remembrance.

I was deeply upset at the news of Claire’s death. When I discovered her YouTube videos in mid-2017, I instantly fell in love with her personality, her eloquence, her thoughtfulness. I really felt a lot of the ideas she expressed and despite the fact that we’d had very different life experiences, it felt like we had something in common, something in the way we thought and felt. And despite only having a few interactions on Twitter, I felt a connection to her – obviously not the same connection as the ones I have with my friends, for example, but a connection nonetheless. She had a big impact on my life and when she died, I felt like I could feel the edges of the space in which she’d previously existed, like there was a hole where she’d been. It was a very distressing feeling.

Two years later and I still feel her loss. She was so full of life. You know how some people just seem bigger than others, have minds somehow more infinite, have something extra special about them? That was always the way Claire felt to me. I’d felt so sure that I’d watch her go on to do even more great things. Her death felt so unfair and it still does. It still hurts. The documentary about her, CLAIRE, came out on the first anniversary of her death and as much as I want to watch it, I haven’t been able to. It’s just felt too hard. One day, I will but I just haven’t felt ready.

Over the last few years, I’ve had several similar experiences. The first, I believe, was Cory Monteith in 2013. I was still watching Glee at the time and he was so young; his death was so sudden. Then there was David Bowie, who has always been incredibly important to my brother, and Alan Rickman, who had been a consistent presence in my life through his role in the Harry Potter films. If you’ve read previous posts of mine, you’ll know how important Harry Potter has been throughout my life. And more recently, there have been the deaths of Cady Groves, a singer I’ve been a fan of for a decade, and Naya Rivera, another Glee alumni.

I struggled with each of these deaths, all of these people having had an impact on my life. But I think the only death that has had as dramatic an effect on me as Claire Wineland’s was that of Christina Grimmie. I’d been following Christina on YouTube for years; I just fell in love with her voice and her piano playing, how unapologetically herself she was. She was about my age and pursuing music so it’s not surprising that I related to her. But with managing both my mental health and university, I’d fallen behind on a lot of people in my social media bubble, Christina included. Then I woke up one day and she was gone; I still remember the moment I found out. I was stuck in a state of paralysed shock for days and I had nightmares that went on for months. Much like with Claire, I felt like there was a hole in the fabric of the universe where Christina had been, should still be. Even now, I still think of her often.

Grieving for a celebrity or public figure can feel like a bit of a minefield, I think. There’s the internal conflict: you didn’t know them personally but the feelings are still very powerful. Plus there are always people ready to tell you that you don’t have the right to mourn someone you never actually knew and because you didn’t know them, whatever you’re feeling can’t be grief. But personally, I don’t agree.

Grief is an incredibly complex emotion. I don’t think anyone truly understands it. Personally, I wouldn’t classify it as a single emotion; I see it more as an umbrella term, a checklist of things you may experience although you won’t necessarily experience all of them. I don’t think there’s a big enough word to describe what we go through when we’re grieving. It’s a natural disaster, an emotional natural disaster. It’s so complicated and having lived through both the losses of people in my life and public figures I cared (and still care) about, it’s my experience that the two are definitely different (having said that, we could have a whole other conversation about how the grief for each person is completely different) but that they’re both real and they’re both profound.

I definitely want to write more posts about grief but I want to keep this one to the grieving of a public figure. As I said, it is, of course, different to losing a person who is physically in your life but if you feel a connection to someone, it is inevitable that their death will be painful. As far as I’m concerned, that connection is the key. Whether they’re an actor, singer, writer, activist… they’re all reaching out, with their stories, their songs, their words. They’re reaching out with the intention of creating a connection with another person, a person who finds meaning in what they have to say. And I think it’s fair to say that – often – the deepest connections are the ones that are built from the most personal places (for example, their presence or their work has gotten you through a difficult time, you relate strongly to something they’ve said or created, etc). So of course we would feel the loss that connection. Of course it would be painful and distressing and maybe even traumatic.

And then there’s the moving forward to consider. There will always be things that remind you of them, such as events they would go to or public appearances they’d make. And in the case of creatives, yes, we will always have their past work but that may be difficult to consume again: the emotions and memories associated with them may be overwhelming; it may be painful because it reminds you that they’re no longer here; if they helped you through difficult times, it may be difficult knowing that they won’t be there to help you through any future hard times; knowing that they’ll never create or release anything new may be distressing, especially when the release of new work was a big occasion in your life.

I think that the only way to truly move through an event like this is to talk about it or, at the very least, express your emotions:

  • Hopefully your loved ones will understand what you’re going through, especially if you’ve mentioned this person before or they’ve seen or heard you consuming their content, whether that’s listening to their music, watching their videos, or reading their works. If you can talk to someone close to you and at least get your emotions out of your body; sometimes I think that keeping the emotions stored inside your body only makes them harder to shift further down the road. (If someone you don’t feel comfortable telling the whole truth asks you why you’re upset, you can always tell them that a friend or someone you know has died – that will explain your mood and they’re unlikely to ask too many questions.)
  • You can express your feelings on social media, if you feel comfortable sharing with an unknown audience. Sometimes that can be too scary but sometimes it can be cathartic to put your thoughts out into the world, not knowing where they’ll go or who they’ll reach.
  • You can write a letter to the person who has died. I’ve always found writing to be a good way of getting my emotions out. If you want to, you could post it online if you keep a blog or something similar, or you could simply keep it for yourself as a reminder of what they meant to you and everything you felt at that particular moment in time. When it comes to such an emotionally charged moment, in the future you may want to remember everything about the experience. You may not, of course, but you can’t know that in the present moment.
  • I’ve always found journaling to be very helpful in coping with and managing the ebb and flow of my emotions. Since it’s just for me, I can feel and say whatever I like without fear of judgement, which I think allows me to move through each emotion with less friction. Putting words to what I’m feeling somehow makes it all easier to process and work through. It doesn’t necessarily mean those feelings go away, but the strength of them does become easier to cope with. And then at some point, they simply become a part of you, a piece in your mosaic.

I’m sure there’s more to say. When it comes to grief, there always is. But I think I’ll leave it there. I hope you leave this post knowing that whoever or whatever you grieve for, your grief is valid and I hope that, if you’re going through any kind of grief, that you’ve found some way to manage it and/or that you have people to support you. I’m not sure if it ever goes away but it does change. Life goes on, even if it feels unbearably unfair. So carry with you the gifts they gave you and try to do some of the good that they would be doing were they still here.