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.