Gifts

posted in: chronic illness | 6
At front, Annette and her husband; at back, Jane and Mrs Blackbird.
At front, Annette and her husband; at back, Jane and Mrs Blackbird.

Even as my world shrank over the years, it was enriched in many ways through the social networks I developed online. The impact of those social networks on my quality of life cannot be understated. Indeed, it was in one of my first online groups in 1997 that I met the future Mrs Blackbird, and many of the heart family who are still a key part of my life.

Friendships with other people who are chronically ill and their families enrich our lives beyond measure. These are people who “get it”. Even better are the opportunities when those friendships extend into the real world and become connections that become treasured memories. One such meeting occurred recently when the wonderful Annette from Rheutired visited British Columbia with her husband, and made a detour to our part of the world.

Annette visited at a time when I was having to take stock of the reemergence of severe clinical depression in my life. Along with the stress of depression, I was in full flare. At a time when I was physically and mentally drained, Mrs Blackbird and I spent a few hours at lunch with Annette and her husband. For those few hours, I felt reconnected again to the world through social connections that most people take for granted. Even though I had to rest for hours before and after lunch, for that time I felt like anyone else.

It was such a pleasure to meet Annette in person. She has followed Blackbird at Night for a long time, and her comments on my posts always helped me to feel there was a purpose to my scribblings, much less an audience! She is so warm in person and such an amazing patient advocate with lots of knowledge. I am amazed that she does so much when living with the challenges of severe rheumatoid arthritis and Sjogren’s syndrome. We talked about many other things too, and I’m very grateful that despite the potential drain on her resources, she made it possible for us to meet and cement our friendship.

Other gifts have come to me in the middle of a difficult time of breakdown and reevaluation through the friends in my social network on Facebook and Twitter. Even if I don’t always have the energy to take part in my networks, my heart friends and family have always made a point of reaching out to me, with little notes to check in on how I am doing. Social networks garner a lot of criticism for being full of vapid and meaningless chatter, but the people who level those criticisms have never experienced what it means to be dependent on those contacts not only for quality of life, but for encouragement to keep going in difficult times. There are no words that can truly express my gratitude better than a heartfelt thank you to those beloved people for reaching out while dealing with their own challenges.

Another friend and heart sister made a point of calling me recently to discuss options for finding new directions in my work. This mentorship means a lot to me, and the knowledge that there is someone who can help me make my first tentative steps forward at a time when it looked like my chances of continued work were in jeopardy has given me a lot of hope and increased confidence that there are options, even for someone with considerable limitations on the kinds of work roles I can adopt. I have never met my heart sister in person, but she gave me the kind of encouragement and support that made a very real difference to me at a difficult time.

Last Sunday night, Mrs Blackbird and I were the recipients of a very special gift — a concert by Steve Bell. This gift was courtesy of another friend who I don’t see often, but who became a part of my life through volunteering, and who has been a friend for six years now thanks to social networks and email. In a real way, this gift was the genesis of this post. Steve Bell is a very talented singer/songwriter, but also an interesting and lively talker. Steve talked about how, when he pictures the end of his life, he doesn’t think about being defined by his achievements. He thinks about how his relationships to others define his life. It’s his role as a son, husband, parent, neighbour and so on that makes up the content of his life.

Steve also talked about including the disenfranchised and the lonely in the circle of our celebrations. My friend did such a thing with his gift of the concert. The fact that I have an “in-person” friend at all amazes me, when getting out of the house for other than treatments or to exercise the dogs (and ummm, me) is a rare event, but I am gifted with a few such special friends. My friend is one of those people who totally gets invisible illness as he lives with it himself. All the way up to and including the event, he checked in with how I was holding up, and made sure I would be okay to go. When bowing out of an event means inevitably “letting someone down”, my friend never once made me feel this would be an issue or a let-down. What a gift that is!

When I reflect on why this is such a big gift, I realize the biggest impediment to establishing meaningful relationships for the chronically invisibly ill is the fear of “letting people down”, given that nothing appears terribly wrong with us on the surface. After a few initial experiences of relatives and friends minimizing, cajoling or guilt-tripping us to take part when we have to bow out of a commitment, we begin to sabotage ourselves by breaking connections before we get to the inevitable stage when we have to disappoint someone, thinking nothing of the disappointment we experience ourselves.

I was reading a blog post (With a Lot of Help from My Friends) by Julia over at Reasonably Well, and how her friends came by to decorate Christmas cookies without a thought of her having to actively be a part of the celebration to be a part of it. That’s another amazing gift. There is very little difference in the wording of “apart” and “a part”, and yet there is a huge difference in meaning.

A lot of people suffer from the winter “blues”, especially at Christmas. For the invisibly ill — one large group of disenfranchised people, others which include the homeless and the mentally ill — this can inevitably mean a worsening of clinical depression. It’s a time when we’re most aware that our relationships to others are or have been broken — irrevocably in some cases — by illness, and we’re most susceptible to loneliness, even if we are as fortunate as I am to have a soulmate or friend in our lives.

If you have the energy to make the rounds of family and friends at the holidays, it would be wonderful if you could include someone who is ill, especially invisibly ill, on your visits. As my friend did with his gift, by checking in that it is still okay, and being okay to depart on a moment’s notice if the visit is too much, you give a most incredible gift. I ended up in bed most of the day after the concert (as much due to the effects of a new vitamin infusion treatment that I am trying), but I am left with a holiday memory that I will always treasure, even if I am unable to do much else the rest of the month.

I am also left with the memory that someone cared enough to include me in the circle of his friendships at a time when many are forgotten. It is my hope that whoever  you are, you are warmed by many such memories. When I have the energy, I think it’s time for a Jimmy Stewart movie festival, starting with It’s a Wonderful Life.

Blessings,
Jane

6 Responses

  1. Gail Reid
    | Reply

    <3 <3 <3

    Not very.coherent at the.moment. but just had to comment.I read your blog.all the time.and you are so adept at.putting everything clearly.even when you are in turmoil. There are quite a.few of us probably that.read and don't comment. You are the rockingest rockster and I totally get the resting.for hours before and after.going out for lunch. Went out for.breakfast in November and I was.sooooo excited I took a selfie.yes very sad :-D . It is great when you get people drop.in just to hang not expecting even chat which is like.wading through treacle sometimes isn't it.anyway I am always reading.ever since I found you after I read a Toni post…I just sometimes.can read and not post.so I am sorry for that but..I lurk ever onward….lol xx hope that made sense mmmwah xxxx

    • Jane Waterman
      | Reply

      Dear Gail,

      What a wonderful gift your comment is! I got such a pleasure reading it! Thank you. <3 I'm feeling pretty tired now and will be heading for a nap, but I will take your warm thoughts with me. It's such a buzz to know that people are reading and connecting with what I write. Thank you!

      Hugs,
      Jane
      xxxx

      P.S. I only discovered selfies this year, but I think we should celebrate ourselves! For years I avoided being in pictures during the worst of my illnesses, but now I celebrate wherever I'm at. Good for you!

  2. Heather
    | Reply

    Hi Jane,

    When I got to the bottom of this post I found I had tears streaming down my face. (This often happens to me when I read your blog and others’. And I always feel I want to thank you for saying whatever you said, and saying it so well.)

    I was so sorry to read of the recent events in your life, but also heartened that you have Mrs. Blackbird and other loved ones to help buoy you along.

    This is indeed a tough time of year … But then whenever I think I am feeling worse than before, if I go back and look at my sporadic journal, I see that this really isn’t worse than before — it’s been this bad all along. Ah! Is this forgetfulness a cushioning mechanism to keep me from crumbling? It’s probably for the best.

    Julia’s cookie decorating party sounds wonderful to me. I used to make beautiful decorated cookies for family and friends, and not just at Christmas time, but I haven’t had the energy or pain tolerance to make them for a couple years now. I miss it, but I’ve just had to let it go, like everything else.

    Recently I had a sobering realization: Even if I found the right, magical pill that could take all my symptoms away, I have no life to go back to. Almost all my friends are gone, I have no network or connections for any purpose, no job to go back to … I would still just be a lost and purposeless hermit. A lost and purposeless hermit with energy who could dance around by herself, but a lost and purposeless hermit nonetheless. The positive spin would be that starting from scratch means anything is possible, but starting from scratch still means starting from scratch.

    I finally got a real diagnosis. My new rheumatologist, whom I saw for the first time December 5, immediately put most of the pieces together without even any prompting. It was so obvious to him that I have an autoimmune disease, and not fibromyalgia. As I have thought for some time now, I have spondyloarthropathy. He is not sure exactly which form of SpA it is, though to me there are only a couple options that make any sense. So now I am starting to try medications — immunosuppressants, DMARDs, etc. (There goes the rest of my hair, I guess!) I am so relieved and thankful to have found a good doctor.

    It’s good news, but also … I went to a spondylitis support group, my first meeting. I was told the average age of members is around 40, like me, but at this meeting, everyone else was older and had been struggling and coping with this for years, trying treatments and medications for decades. It was a very positive experience while I was there, but afterwards it brought me down because it really drove home to me that this is a forever thing. There were some (moderate) success stories, but even for those people, this is forever.

    Well, blessings to you in this season of giving. You give a lot by sharing your life with readers like me. I am glad you’re surrounded by love and caring hearts.

    Heather

    • Jane Waterman
      | Reply

      Dear Heather,

      Thanks for your comment. I understand so much of what you’re saying. I think you’re right that selective forgetfulness is a blessing in disguise. There are some parts of our pain and disease process that we really don’t want to remember. *hugs*

      I have also started from scratch. In my mid to late twenties I sabotaged myself so much that I was effectively cut off from family and but a few friends at work. Even though I pushed myself to do so much (way too much but back then I didn’t even have an inkling of a diagnosis – I called it chronic fatigue because I didn’t know what else to call it), I didn’t really socialize a lot. I would often go to the city on the train and visit art and cultural things, but often on my own.

      The internet really was a huge boon for me. I was pretty much very ill mentally and physically, but I started making friendships by being totally authentic about where I was at. Not only that, people embraced my honesty and sensitivity, whereas before it had seemed like a curse. It still hurt that I didn’t have much “in-person” contact, but I built networks all the same, and to my shock, I still have them 16 years later!

      I hope you feel in a very real way that you are starting to build your own networks. You are always welcome to email me if you ever need to vent.

      I am glad that you finally have a doctor who can help you and has given you a diagnosis. I know the prospect of a lifelong illness is scary as hell, but I found being given my Sjogren’s diagnosis really put an end to the crazy-making years of “what the hell is this?” That’s why I’m not prepared to have rheumies see me for 15 minutes and undo that diagnosis unless they can give me a sound argument other than “I don’t want to agree with your first rheumy”.

      I hope the support group will help you. To be honest, I always got on better with people older than myself. I found most of the time they were open to my experiences and more accepting than my peers. Now that I’m in my late forties though, I find most of my peers have had a lot more experience and can empathize better with my experiences.

      Thank you for your feedback, hon. It really warms my heart to know that my writing is making a difference. There’s absolutely no better gift I could have.

      Reach out anytime you’d like to connect. Many blessings and hugs,
      Jane

  3. Lorna
    | Reply

    Jane,

    I’m so glad you are have been blessed with much deserved gifts. You have been a gift to me, your friendship and support has helped me more than you could know. I look forward to our growing friendship over this coming year and hope that there is better for all of us dealing with these Autoimmune diseases. I’m thankful for you and will always be here if you need me.

    Hugs and love to you and yours.

    Lorna

    • Jane Waterman
      | Reply

      Dear Lorna,

      Thank you, Sweetie. I feel very glad you’ve come into my life, and I’m grateful for the gifts you bring me. Like you, I look forward to our growing friendship. *hugs* Next year I will be reevaluating my work life and want to spend more time in meaningful work, including the wonderful friends I have made online. It truly is a silver lining, the richness of relationships we grow through because of the limitations of these difficult illnesses. I am forever grateful for that.

      Likewise, know that you can email me anytime if you want to connect or vent about anything. I’ve been battling some kind of virus and headache the past week, but even if I’m not around as much, I will get back to you as soon as I can.

      Lots of love and big hugs, Sweetie,
      Jane

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