The Undying Memory

Young people who live with chronic illness may often be concerned about how their peers are going to perceive them. They may also become very anxious when they have an active episode of their illness,as it may activate memories of when an active episode of their illness was associated with some traumatic social experience. It is not easy for an adolescent to have to miss days or even weeks of school at a time because of their illness. When returning to school this adolescent might have to answer many questions about why she or he was out for so long, and at times this can be uncomfortable. Other times, depending on the illness, the adolescent may return to school with some visible marker of having had an episode of the illness, such as an oxygen tank, crutches, a cast, scars, hair loss, weight loss or gain, among others. Oftentimes, the adolescent may experience great social support upon his or her return to school. Peers may express concern for the person or happiness that the person is healthy enough to be back in class. Sometimes the return to school does not go well and people may stare, make insensitive or inappropriate comments, or isolate the adolescent who already has a lot to cope with.

If the experience of being seen again by peers post active episode was extremely unpleasant, this experience may become stuck in the person's memory and may serve as a template for how the person expects future encounters with peers post active episode to go. This undying memory of the unpleasant experience can cause a lot of anxiety for the person, even if there is nothing to suggest that the situation will be the same as before. For example, a person in college may have not had an active episode since middle school. This person had a horrible experience when he or she returned to class during middle school. This same person now in college has an entirely different set of friends, additional skills for coping with his or her illness, and practice explaining what his or her illness is for when people will ask. However, the act of returning to school, college or not, may activate that memory of what it was like in middle school and may create a lot of anxiety and fear. The person may feel isolated from connecting with peers or different because of the physical illness. The person may be tired of explaining what the illness is, or if physical signs are present, the person may suddenly become increasingly sensitive to stares or may feel unattractive. This at times can be enough to make a person want to avoid facing his or her peers all together.

This is an enormous challenge for young people living with chronic illness. Avoiding the situation may be the knee-jerk reaction for coping. If one takes a minute to think about it, avoidance is not fair to the person who is living with the illness. Why should anyone miss out on all the things his or her peers get to experience? Some people with chronic physical illness may already have to skip certain activities or events that their peers do not. Why short change oneself? It takes a lot of courage to stare that old memory in the face with pride and walk past it in an effort to make new memories. People may ask, "Why were you out of school for so long?" or "What is that illness you have? What does it mean?" Nobody is perfect and everyone is different in some way. Perhaps by answering peers' questions one may be educating his or her peers. Peers might just be asking out of curiosity, rather than with the intention to make one uncomfortable.

Imagine what it would be like for the adolescent living with the chronic illness to have accepted the illness him or herself. If the person has come to accept him or herself, likely the peers will too. Remember, a lot of the anxiety and fear is coming from one's own memory, within one's self, rather than from the present or the current peers. There are always opportunities to make new memories. If for some reason the current peers react in a similar way to the peers in the memory, one may want to think about why that is. Perhaps it is simply out of ignorance. The peers might not understand the illness and may need further explanation, or they might just need some time to get used to being around someone who lives with the particular illness. If for some awful reason the peers absolutely cannot accept the person living with the illness, one can still change the experience so that it does not become a repetition of the memory. If the peers do not change, the way that the person living with the illness reacts to the situation can.

It all comes back to self-acceptance. Everyone wants to be accepted by others, but if a certain group cannot embrace you, as long as you accept yourself, you will find people who will too. The undying memory is only powerful so long as you keep it strong with avoidance of self-acceptance and avoidance of new experiences. Although some memories may remain immortal, if you take control and walk through the fear and anxiety, these memories can become distant specks in a rich life full of pleasant experiences.

Memories Lost, Moments Gained

What was the name of the place that I visited at least half a dozen times? You know, what's his name...the guy...its on the tip of my tongue. I think his name was Mark, no Mario, no Martin...yes Martin. What I ate for lunch yesterday....I don't know.

Some chronic illnesses, such as Multiple Sclerosis, are associated with various types of memory impairments or loss. Some illnesses may make it hard for people to retrieve stored information, and other illnesses, such as Alzheimer's Disease, may make it difficult to retain newly learned information as well. Depending on the specific chronic illness that a person is living with, the reasons why some people with chronic illnesses may experience memory impairments are not always clearly understood. Forgetting well-rehearsed information or not being able to remember things that you may have just learned can be extremely frustrating, regardless of the source of the memory problems.

It is easy to become upset or even depressed about not being able to recall things that you would have easily been able to in the past. It can feel like you are losing aspects of your life or your self, and it can even be experienced as chaotic at times. Sometimes one may even become so preoccupied with making sure to remember an event that an entire moment, lasting from minutes, sometimes hours or even days, is spent focusing on not losing anymore memories. It makes sense; it is understandable...memories are retained but are any new memories and experiences gained?

Letting go of the fear of forgetting is one of the biggest challenges for people living with chronic illnesses associated with memory loss. It is sad when significant aspects of one's life disappear--temporarily or permanently. However, new experiences are always being made in the moment and you do not want to miss out on them. For example, right now you may be sitting with your beautiful baby niece and maybe you cannot recall what she did the last time you saw her, but you are seeing her now and she is looking at you and smiling. Experience. Life does not end with memory loss, but rather present moments are acknowledged as impermanent, making them potentially appreciated and cherished more than they ever were before.

Today may be forgotten but for today have fun, and since tomorrow you may not remember the happiness of today, recreate joy tomorrow by doing something you really love. You do not need a memory to know what makes you feel good, you just know it, and memory for doing things (like riding a bike) almost never disappear. When a memory is lost, focus on what you can makes the littlest moment matter. Perhaps every minute of every day would not be so important if you were not so worried about forgetting them. You could just sit, close your eyes and remember all the happy times that you have had. Well if you cannot remember them, then just get up and do what feels good. As for all that practical information that you wish you could remember...write it down. Yes that stuff is important but it makes no difference where it is stored (i.e. brain or blackberry). The present matters. What are you doing right now (besides reading this)? Are you worrying about memories lost or are you gaining a moment?