I have a support group for the disease I have. It’s online. I have been a part of in person support groups. For example, when I lost my first husband to cancer and I attended the parent support group while our six-year-old attended the children’s support group. I can’t say enough about how grateful I am for what they did for our family at the time.
Fast forward 20 years and the world is a completely different place. Even pretending it’s not 2020, even as of last year, I had access to not only an online support group for my disease, but support groups for different areas such as people taking specific medications, or people with certain specific presentations of the disease. Even for people that have cancer in addition to the disease.
The value of these support groups is probably not quite appreciated by most of the people who have them. At least not in the way I do. You see, 20 years ago I lost my first husband to metastatic melanoma skin cancer that spread to his lungs and brain and took his life at the age of 28, with a 20-month-old baby and a six-year-old daughter left behind.
We had America online dial-up Internet. Most people today don’t even know what that means. It means we had to listen to a dial tone, a phone number being dialed one digit at a time, and A lot of very weird sounds every single time you logged on, and several seconds or minutes between pages. Complicated pages could take several minutes to load. I remember dancing baby that took about an hour.
I did happen to find an email support group for stepparenting, and it was the first I ever joined. But I was more inclined to use the Internet, which was new, than Josh was. He also never went to an in person support group. So, in my mind, he was alone. And you have no idea how often I think about that. I try to imagine what it would be like if I didn’t have anyone to text, message online, ask questions to in a group, or even search archives and pages for stories similar to mine, so I didn’t feel so alone.
It breaks my heart, and reminds me how lucky I am to have online support groups today. Recently, we lost one of our brightest members (ironically within hours of the 20 year anniversary of my late husband, so close that I had a candle lit for both of them at the same time). He was intelligent, well read, an incredible researcher, had medical expertise, had cancer in addition to my disease, and was one of those people who was always there for anyone who needed him, whether he knew them or not. I was the beneficiary of that help when I was in the hospital for 10 days and started to lose my mind. He was on the phone with me almost immediately and already had the phone numbers of specialists in my zip code.
The support group, which the family knew was a big part of his life, was invited to attend the funeral via video using zoom. I’m not sure we would have even had this option, were it not for the virus. But then, if it wasn’t for the virus, maybe the funeral wouldn’t have been this soon.
Nevertheless, the connection so many of us feel two people and support groups is stronger than some of the connections we have in real life. Behind a computer screen, we feel safe enough to share more, feel more, cry more, scream more, stand up and clap and dance in agreement more, and basically we are more free to be our authentic selves, when doing so in person may not be so easy. So there are things we share with online friends that we would never share with a person who lives in our lives.
I did learn that there is a word for the grief that goes with someone you knew only virtually, or in some way other than being physically present in your life in some way: disenfranchised grief. I’ve written about it before, but if you don’t know what this means, it’s worth looking up.
Because of social media, because of the Internet, we have something my late spouse never had. A community of support. Whether it’s emotional support, sharing information about different treatments, side effects, and experiences, just venting once in a while, or even sharing a funny meme or inspiring quote, there is always someone there. At almost any hour, somebody is awake and will get your message. And even a little hug emoji without words may be enough to make you feel less alone and how my late husband must have felt without that kind of support.
One of the most traumatic memories for me is when he asked me if I would allow them to cut into my brain if I were him. I told him that’s not a question I can answer for him. I would support either decision. And I made sure he knew that, and that he could talk to me about it. But I couldn’t make that decision for him by telling him what I would do. Nor did I know what I would do. I can’t help but think now that this is the kind of question he could have discussed with an online support group that had been in his shoes and could identify with the question. Someone who felt qualified to give him a better response than what I could.
So I am grateful. So very grateful that while it was too late for him, I have been able to benefit from the support of online friends and support groups, and I never feel completely alone. My world is so much larger, and even my perception is changed when I get to add global perspectives by learning how other countries use different medical systems. I do still wish I could go back in time and give that gift to my late husband. But I’ll take what I can get.
To my Internet friends and support group friends, thank you so much for your support, and for being there anytime you happen. In a life where my condition could have meant almost complete solitude, I was given the gift of you. And I will never stop being grateful for you.
I'm Still Breathing! 