Sick (13 page)

Be patient with yourself. I am not always patient or understanding of what I perceive as my supporters' weaknesses. This may have to do with feelings of guilt for needing/expecting of them – which you should get over because you both provide things for each other. Explore these feelings to find if you should express frustration as there will be times it is most certainly justified. But before doing so, think it through and talk about it with someone else to see if you should bring it up or if it is something you might need to work on alone (first).

Assess where you are, who you're with, how much time you have and more before launching into things. I'll add a qualifier: “when you can.” Of course there are going to be times you cannot hold it in and shouldn't! And those who will be there for you at all times are the best.

Give gentle reminders. Everyone forgets. Like if your friend is asking you to go on a bike ride even if you told them the other day that you can't ride a bike right now, tell them again as nicely as you can. This can be especially true with an illness that is at times invisible as it can make people (yourself included) wishfully feel as if everything is fixed and will not be bad again. This, unfortunately, may not be true. So know that after each one of these relapses you may have to start over in your illness reminders or sensitivity requests.

If their forgetting seems more like a chronic problem, rather than just an honest mistake, try to communicate about it openly. Confront them constructively with I statements like: “I feel sad when I have to remind people frequently of my new physical limitations.”

There are going to be certain people with whom you may not be able to discuss your illness with or rely on support from. This is not to say they are bad friends or people and it is not that you won't still be able to have some form of a relationship with them or that this will not change. You'll probably know who these people are fairly early on. In more serious situations, you may want to decide how much you are willing to stand in case you have to make the decision to not have them in your life for certain periods or forever. Remember your right as a person and especially “as someone struggling with health issues… to try to surround
yourself with loving and nurturing people and move away from those who are just taking up your emotions” (as said by Ben, your lovely zine editor).

Be appreciative! And show it! Everyone needs reassurance they are doing the right thing. So work within your means to give your supporters the appreciation they deserve. If someone asks how you're doing and that makes you feel good, tell them! If someone bakes you gluten-free, vegan cupcakes make sure they know how much they (the person and the sweets) mean to you (thank you Tom!).

Try a support group. This may be especially useful for several reasons: you are able to talk with people who are experiencing similar things and it could act as a supplement for lack of support from friends, family, partners, etc. If there isn't one in your area that you like, start one.

Go see a counselor or therapist if you can. It's great because you can say anything you want to them! You don't have to worry about their feelings or about saying things that will affect how they react to you. Their help may not be free or easily affordable, but it might be easier than you think. Many universities have counseling services that are free if you are a student and community organizations may offer similar services to all. Search around.

Remember you. Remember who you are. You are not your illness but an amazing creature. You are changed, but you carry many of those things you always have. Remember those things when communicating with people and assessing situations.

Do something for yourself every day. It helps the spirits.

Do something for others every day. It helps the world go round.

Lastly, use what you've learned from your experience of receiving support and use it to give the best support you can to others.

That is quite a list, but certainly not exhaustive. Basically, it's about listening to each other. Being honest about our concerns and expressing gratitude. Being kind and open. As always, it's about creating a world where we all want to live. Remember: we're all in this together.

I like to think, if nothing else, these experiences with illness/death/other tough stuff help us be better supporters and supportees.

P.S. a huge thank you to Ben, Mandy and Brittany for their great feedback!

“So writing this is gonna be really difficult. Not difficult like riding your bike ten miles home after you flipped over your handle bars and scraped up your knuckles and knees but difficult like riding your bike ten miles up a hill and knowing that taking a break from pedaling is not an option.”

—Jodi Tilton, date unknown.

That is an excerpt from a poem that I didn't discover until my best friend, Jodi Tilton, had passed away. It gives me the tiniest glimpse into her experiences living with colitis. It is because of this glimpse that I continue to think, discuss, and read about the idea of “care.”

Jodi and I became friends in 2004. She was a friend of a friend, who I had seen around at local events and shows. I remember this mutual friend talking about her many trips to the hospital. It wasn't until I became much closer with Jodi that I came to realize how much colitis impacted her daily life. We became involved with a local community organizing project called the Long Island Freespace. Our friendship was of a care and a depth that I miss tremendously and have not been able to recreate since her death.

For the record I do not have a chronic illness nor have I ever been diagnosed with a serious illness. However, I am no stranger to hospitals, the disempowering attitudes of doctors, or daily pharmaceutical regimes. In the summer of 2007, I watched nurse after nurse jab IV needles in my best friend's tiny veins. I had conversations with her as she began to lose motor function. I held her hand as she lay in a hospital bed in a coma. I watched her family make the decision to terminate life support. Perhaps I have something to say about illness-but let us rewind.

Jodi had a chronic auto immune disorder called colitis. Without going into too much of the medical details, it affected her ability to digest food properly and therefore absorb nutrients. When she would have flare ups, her weight would fluctuate ten to fifteen pounds. Sometimes this required hospitalization so she
could be provided with nutrients through an IV. In January of 2007, she began to have a series of flares ups that brought her to the decision to take a prescribed steroid, something she had always avoided. Because of the intense mood swings and other side effects of these drugs, she was prescribed various anti-anxiety and sleep aids. Fed up with the amount of pills that her doctors were pushing, she eventually chose to take an experimental medication in June that was an intravenous treatment. Her family and friends do not know the exact connection between this and what happened, but within a month she was hospitalized and within two weeks of that she passed away.

I think about the mistakes I made. I ask myself ‘was I a good enough friend? Were there things I could have done differently?' My personal answers to those questions are just that —personal—but her death has gotten me thinking about communities and support.

A common cry we have in radical communities is “be the change you want to see” or “a new world is possible.” What does this look like? I am tired of the same sorry blanket response of “whatever you want it to be.” I am in search of a very practical, compassionate and effective approach to dealing with illness (and other areas where support is needed, such as death, acts of violence, etc.) People within my community are getting older, some of them have been diagnosed with conditions that affect their day to day living. Some have battled cancer or other serious diseases.

The first thing I learned from Jodi is in order to be a supportive friend it is imperative not to ignore a friend's illness. There were times when Jodi's illness was like an elephant that many people chose to ignore. A group of us would be out for drinks or at dinner, and she was not able to eat or drink while others enjoyed in the gluttony. Sometimes there was no acknowledgement that she had not been eating because her illness would not allow her to hold her food down or would cause painful diarrhea. She hated that. In addition there were even friends who in not knowing what to say, said nothing at all-and eventually grew distant and allowed the friendship to fizzle. Jodi was incredibly loyal to her friends and it made her illness so much more painful (quite literally because it was compounded by stress) to have experiences like walking by someone on the street who used to be a close friend without any acknowledgement.

Another thing that I learned from Jodi is to understand the difference between being a good listener, and keeping your two cents to yourself. Asking the question “how are you feeling?” without real sincerity is half-assed and frustrating. Jodi used to hate that question. “I feel like shit ok…do you want to hear about it?” was the response she always wished she could say. Being a good listener isn't easy, depending on the severity of the illness, it can be exhausting. I watched my
friend Jodi struggle for six months before deciding to go on the new treatment. I would listen to her as she expressed frustration because of people she considered friends who did not return
phone call after phone call.
In addition, it is not really helpful to offer up advice to an illness that one doesn't know anything about. Telling a person with colitis to drink ginger ale to help their stomach problems is frustrating at best and patronizing at worst. If Jodi wanted my voice, she asked for it. By being a good listener, you don't impose on the person with illness's voice.

In addition, I believe if we are trying to create systems outside of capitalism and other systems of oppression, supporting friends with illnesses has to be more organized. The weight and task of supporting friends cannot fall solely onto the shoulders of a partner and/or best friend. We have to take these discussions outside the realm of whispers and late night phone calls of suffering. Besides being isolating for the person fighting illness, it leads to burnout of the closest in contact-and therefore is not sustainable. We should also ask ourselves, ‘Is the act of CARE falling to the gender most often associated with care?' That is also not sustainable in addition to falling into the systems of oppression that many of us work against. It is the role of the community (and the test of one) to walk beside those of us who are fighting.

Though undoubtedly incomplete, the following are a few additional ideas on community effort that needs to take place when one of our own falls ill.

In the case of hospitalization, groups of people can gather goods in the form of a gift basket. Hospitals are weird places. Having a toothbrush, some soap, and deodorant (and a book) makes the experience a little easier. This should not be the sole responsibility of any person. This is the easiest of collective endeavors.

Based on the needs of the person in the hospital, is someone visiting at least once a day? The person hospitalized may not want visitors all the time, or they may. If it is the case where they enjoy the company of friends (sometimes it is a welcome distraction to the doting of parents) then people should coordinate with their work schedules to swing by, if even for twenty minutes. I recommend bringing a favorite food or slice of cake, if medically possible, because hospital food is gross, especially if the person is vegetarian or vegan.

Let's say a person isn't hospitalized but is home bound after a treatment or flare up. Sometimes day to day routine becomes super exhausting. Cooking a meal for a friend is a way of keeping them company and meeting their nutritional needs. Depending on the needs and desires of the person working through their illness this should be organized in a way to share the labor. One person takes Monday, another can take Wednesday, another Friday, etc — or whatever meets the needs of the person. Maybe the person's dietary needs are taken care of, but is their laundry, errands, or even grocery shopping handled?

Let me stop and say that I feel these are simple ideas. Share the labor. Duh. People should take turns providing care. Duh. These are elementary ideas, but I wish I would see them more. I think about ways that we could have better served my friend Jodi in her illness. But what really got me thinking again even more ardently about this idea of community care is how the same fucking mistakes were being repeated as other friends battled sickness.
So if what I'm saying seems elementary, then I ask my community and myself, ‘Why are we not doing it?'

Another way that we can support our friends as a community is by holding people accountable. Some may say this is a “call out” process. I would prefer to say it is a way to challenge those we surround ourselves with. I can't count the amount of times that Jodi would be expressing her frustrations to me on the phone about feeling rejected or ignored by her friends simply because of her illness. It is hard to find the words for a friend who is ill but habitually refusing to say anything is
just unacceptable.
More than her body failing her, this is what hurt Jodi the most
-being ignored.
This is where as a community we can be better. We need to reach out to each other through our own methods of self organization and remind people how their actions are hurtful.
We need to reach out to each other to push ourselves through uncomfortableness in order to best support a friend.

Finally, continuing these discussions as they are applicable to our respective communities is super helpful. Providing people who fight disease and illness the avenue to share/vent/kick/scream/ educate is a valuable tool.

I am aging. My friends are getting older. Our bodies are changing and there will be more of us who will come across health complications that come with age. The fact still remains that there are some of us within our communities who have been dealing with health conditions for a long time. These questions are not going to go away. I came up with some thoughts and plans of action and I am sure that there are many ideas out there. More than anything I just offer the challenge to be more conscious of community activity in terms of how we care for our members.