My son has a chronic illness, two actually. This summer and into the fall one became progressively worse. It affected every aspect of his life, school, friends, family and increasing aspects of mine and my daughters lives. I'd like to add that by this summer I'd already spent 3years with different professionals, put my son through hours (and hours) of testing, became an unpaid professional advocate of all things Graham.
After many attempts by various professionals and unsuccessful outpatient treatments it was decided to hospitalize Graham to gain control of his condition. He was in hospital for 34days. I drove the 50 minute drive there and back twice a week. I spent a lot of time in the car. Our whole family spent a weekend at the hospital and in a hotel for a family education weekend to prepare all of us for what our new home life would be like.
Graham's condition runs in both families, mine especially. It killed my father, has hurt my brother, and I live with it daily. Genetically speaking having three kids was a bit like spinning the roulette wheel, I could look back now and think I was irresponsible knowing the odds were at least one would inherit this disease. At the time I didn't think about it, and even with the knowledge I have now I would still want each of my kids, just the way they are.
People knew my son was in hospital, that I was going back and forth twice a week, that his father was out of the country for half of the admission. Early on I had someone invite me out for tea just to confirm that he was actually in hospital. That cup of tea was the last I heard from that 'friend'. She had her gossip and didn't need me for anything else. We've had pitying looks, forced smiles and people purposely not looking. I've seen the fear/relief that is wasn't their child/family who was suffering. That fear kept many people distant. My daughters were particularly courageous, and faced this head on. We did have some actual friends who showed genuine concern, one even showed up with cookies and just listened, that gesture still brings tears to my eyes when I think about it.
My daughters became more self sufficient, and more than once had to step up into a parent like role. My ability to do my job decreased, and forget any social life. Yet during all these months no one ever showed up at our door with the standard pan of lasagna. We didn't receive any cards, Graham only received cards and notes from us, one friend and my brother (my mother reluctantly sent a formally worded typed letter, after I asked several times).
Graham came home mid December, horribly behind in school and 10days before final exams. He had 16 hours a week of outpatient treatment (add 4hours of driving time to that) he had to attend. His time was school, homework, treatment, sleep with room for nothing else. Catherine and Lizz were on their own 4 nights a week. Still no lasagna, no casseroles, baked goods or cards. I asked for help, and a few very kind people came to help with the driving a couple of times a week, help I truly appreciated.
Now, if Graham had cancer, or been in a terrible car accident people would have been lining up to help, our freezer would have been full of food, and I would have been able to openly grieve for the healthy son I had lost. There would have been gifts, prayers, cards, phone calls and support for my family.
Graham doesn't have cancer, and he has not been in an accident. My son is an addict, and there are no cards, balloons or special stuffed animals for addicts. Despite the fact that addiction is recognized by the American Medical Association as a Disease. Despite the fact that Insurance companies and medical doctors all treat it as a DISEASE, addiction disorders carry a shame and stigma that they don't deserve.
Six years ago when I got sober I did it in secret because I couldn't deal with the overwhelming shame, failure and judgement. I had watched my father die from this disease. Still some friends found out, one of them refused to let me drive her child to my daughter's birthday party. For the next few years I was 'watched'. The only place I found compassion was with a group of my peers. People who had been through hell, and were supportive and compassionate because of it.
So now I watch people judge my son and I want to scream. I want to shake them until their prejudices fall out of them. I want to point to the number of people who have died, not from a moral failing, but from a deadly disease, but it's no use. People are afraid, and it's easier to to believe that if you breastfed, if you never spanked your child, if you read them the right books, had them in the right activities that your child would be safe (did all of those, thought that myself). That if you only applied a little will power that this sort of thing wouldn't happen. It's easier to be afraid and blame, to see addicts and alcoholics as 'other' people, people that lack will power, people that are weak, dirty, dangerous and not worthy of compassion.
I can't talk about how afraid I am, how powerless to fix my son I am, so I smile, I nod and keep my chin up, and I write, I write pages and pages, and the occasional blog.