Random Acts of Kindness

(First published on 30 June 2012 under “pained.wordpress.com”

I have taken my second dose of nasal administered Toradol this morning – about an hour ago. My first dose was at 10:00 last night when I knew I had held this off for as long as possible, and I was going to have it now whether I wanted it or not. My flashing light auras had been present all day, and I knew the night before that I one was on the way. I woke at 4:00 am, my normal time for this kind of migraine, and I lay in bed unable to sleep. I listened to the soft breathing and little sounds my dog Sophie makes when she is sleeping. They are so sweet and comforting. They remind me that kind of slumber is possible, even if I am not a dog.

I lie in bed going in and out of sleep as the pain increases. I need to get up and take another Toradol dose. In my dazed sleep I watch myself doing this several times until I realize I am still in bed. I get up, take the meds before things get worse and then impossible, walk Sophie and settle back down for a day of rest.

I moved two days ago (just 9 miles up the road) to a 55+ community, hoping I will be able to make some friends and not be so alone with this disease. I don’t want to impose on folks so much as I need real people to talk to. Some days when I have had a particularly bad spell – the over 60 hours in length – it will take me another 3 days or so to recover and getting Sophie out for her walks is very difficult.  I am on the ground floor here, which helps. Today I will miss the end of month “gathering” where I wanted to meet more of my new neighbors. Once agin, I have to cancel.

I have met my immediate neighbors – all friendly and all dog people. Each person has let me know they will take Sophie out if I am laid up, which is reassuring. My old building in LA was like that, but not many others. I have always tried to have a yard for my dogs, but it has gotten more expensive, and as a single person, unable to work because of chronic migraines, my budget is as limited as I am. Too many years of doctor bills, medications running over $20,000. a year and that is with health insurance!

This move is my second in 6 months.  I made it primarily because there are more amenities at this complex, and planned activities. I would not necessarily join in everything, but the opportunity for contact with people with whom I can interact is there. (I just had a hot spear go through my eye, so I am going to try to get this finished and posted before I take another round of Toradol.) The nasal spray works well, but burns my nasal passages horribly, and the pain just adds to the migraine, and the nausea if it does not get absorbed quickly and runs down my throat into my esophagus and stomach.

All of this is backup.  I have always been a very independent person. I have always lived alone except for a 10-year period when I was seeing a man with whom I shared a business. We spent a lot of time together but somehow it worked. We were a great team. After 10 years our work lives were beginning to change. Our client and business needs were separating, and the relationship parted with it. Since then I have had little outside help other than the systems I put in place to take care of my illness.

Being single and living alone for a person with chronic migraines is like being in the wilderness with minimal supplies. I have dog walkers I pay, people to do errands that I also pay, or I can call friends. I make sure I have ready-cook meals in the freezer. If I have to call a friend, they almost always say “no” to my requests for a quick trip to the store, or a walk for Sophie. I have learned never to call them unless it is an absolute emergency.

When I have lived in a city like New York or LA – or a suburb of a city that has vendors with delivery services – I can get things done for myself more easily. But sometimes that is not enough. I just need someone to know I am still alive. I can go two weeks or more without talking to anyone, or seeing anyone I know.  One day it occurred to me, after a particularly long and bad attack, that I could have a stroke in bed from one of these things, die, and no one would know. My psychiatrist reassured me this was a highly unlikely event to even consider, but in the back of my mind, it lingers.

A few times friends have brought over food – cooked, hot, and edible for a delicate stomach. The all-purpose chicken soup is especially wonderful, and I have appreciated that gesture more than they know.

One friend just sat with me for a half hour. I was in tears the pain was so bad. I knew the tears were making the migraine worse, but I could not stop the flood.  She just sat there and held my hand. I did not have the heart to tell her that my entire body hurt, and even a soft touch was too much. She kept telling me I was not alone, which was the most comforting time I ever had with a bad episode. We lived in the same building, and although later became estranged over a series of incidents, we reconciled our differences before I left. Good for us both, since there was a lot of shared experience and good feelings underneath the events that caused the problems.

It is the little things that I remember people doing for me when I have been really ill. Making sure I have a bag of ice in the freezer. Food I can microwave. Plenty of water – bottled if I don’t have a filter system. Help with Sophie if I need it. Talking to me in person for a half hour, and not leaving food outside the door on the way somewhere else. I know everyone is busy. It is easy to think that about anyone who is ill, but especially chronic disease like migraine, that can hit several times a week. It is too much to ask for others to take anything but the smallest time from their schedule to help. They did not sign on to be your care-taker when they became your friend.

I have thought about this a lot as I have lost friends because of this disease, and my inability to take part in everyday, normal life. Contact is not care-taking.

Many people shy away from helping someone who needs a bit of short-term help. They are afraid it will become a burden, or worse, I will expect their help, no matter what. They are unaware that I, and I think most chronic pain sufferers don’t ask anything of anyone, except in the most severe circumstances. This is an important distinction. As a single, live-alone chronic migraine sufferer, I live in my world mostly devoid of people besides the checkout clerk at Trader Joe’s and the pharmacist. Any personal contact by a friend is more than just a visit. It is a feeling of inclusion into the world I so rarely get to enter that makes it so special. Thirty minutes are enough.

I made the mistake once of calling a new-ish friend when I was hurting and needed to blow off steam. She was at home, listened to the message, but did not answer. I took a risk making the call. She is a fragile person, and she misunderstood what I needed – someone to listen. The next day I was fine and back to normal.

I received an e-mail 3 weeks later telling me that my phone call had upset her so much she cried for 3 hours, and decided she could no longer be my friend. Perhaps when I was feeling better and I could be my funny entertaining self, we could be friends again, but only on that basis. My need to blow off steam when I was feeling down, to get an “I understand” or  “I’m sure it will pass, you’re a very strong person” was interpreted with total rejection. I know this had to do with her issues not mine. I know she misunderstood what I needed, and turned my need for someone to listen, into a larger than life decision over what she could and could not handle as my “friend”. I took the risk to think she might be a “friend” when “acquaintance” was the limit of our association.

I decided not to respond to the e-mail, and we have not spoken since, although I miss her warm sense of humor, her creativity, and the fun we had with each other. Others think I was overly harsh, and did not have to go to such lengths. Others don’t have to cancel 95% of their social engagements because of severe chronic pain. I could have explained the situation to her from my point of view. For me it was in the realm of something she would have to figure out for herself, should she be so inclined.

Others think I am not busy, and have time on my hands. I am as busy as anyone else, combatting a disease for which there is no cure – at least not yet. This is hard work, the same as someone fighting any other disease. The only difference is that there is no cure. I am forever trying new drugs. Many don’t work, some make me sicker, nauseous for a week while my body adjusts, only to have to stop using it because it just doesn’t work with my system that has suffered with this disease for 43 years. Chronic pain from migraine does not have the proper appearance in the outside world where visual content is everything. It is largely invisible by those who have it, and is often under or mis-diagnosed by the estimated 36 million people who have it in the US.

I often wonder why people shy away from hospital visits to friends, to those who have lost a spouse or good friend to cancer, other disease or old age. It is not hard. It takes no special skills. Food for the stomach, and some conversation for the soul is all that I would like. And perhaps the company of your time here and there. Nothing outrageous. Just a friendly face at the door.