Some Thoughts for Caregivers

It occurred to me in speaking with a friend (who also deals with a chronic health challenge) that Fantastic*Aplastic should also be a resource for the people who love and care for a person with an illness. If you are such a person, I salute you.

"Caregiver" can mean many things. Whether the parent of a small child with a disease, the partner of someone facing a disease, or a friend or family member, each of you no doubt has experienced the full range of emotions that go with caring for, worrying about, and sometimes being irritated by your loved one. "Caregiver" does not have to mean that you are bathing and feeding someone. More often than not, it simply means that your life contains challenges and fears and frustrations as well as small joys that it would not were you not caring for and loving someone with a disease.

Just as the person with the disease must allow herself to grieve her pre-diagnosis life, dreams and assumptions, so must the caregiver. Many times the caregiver does not allow him or herself to feel that grief because it engenders feelings of anger or disappointment that seem to border on disloyalty to your loved one. I have no clinical psychological experience or qualifications (so bring a large grain of salt to this reading), but based on personal experience I would hazard a guess that allowing yourself to feel that grief is a necessary step to being the best partner, parent, friend, brother that you can be to the person who needs you. Until you can grieve The Life You Imagined out of existence and come to look at The Life You Have as equally exciting and valid, you will be unable to bring the right level of genuine positivity and sense of possibility to your and your partner's/child's/sister's life.

It is okay to be sad and mad that your child's life will be harder than you dreamed when you held his 6 pound 3 ounce newly-born person in your arms. It is okay to be sad and mad that the marriage you envisioned with spur-of-the-moment trips to Bangkok and Fiji will have to involve trips to places with clean water and malaria-free environments. It is okay to be sad and mad that the perpetually-upbeat person you married or knew when you were a kid now has bad days where you can't seem to reach him and make it all better. On that note, for parents, it is absolutely okay to be sad and mad that there are indeed some things you cannot make better for your child. Every parent figures that out; you have simply been forced to realize it sooner.

Every diagnosis precipitates a reordering of priorities, a realization that some things will never happen, that some things we don't want to happen will, that our lives as of this moment will never be the same. It can't be sugarcoated, nor can it be avoided. Those who attempt to avoid the realignment find themselves depressed and resentful, but unable to express their feelings because they seem to blame the victim for the situation, thereby leading to further depression and resentment.

If you can, find a way to talk about these feelings, be it in a support group of with clergy or friends. For partners, sometimes the greatest strength you can derive is from each other; don't assume you can't tell your partner how you are feeling. It may just give them permission to express their own fears and disappointment to you. I predict that your marriage will be stronger and more fulfilling for having had these conversations. The person with Aplastic (or whatever) can stop feeling like a total failure and factory reject, and you can stop feeling like the mere fact of being sad at the situation is somehow a mark of disloyalty to your loved one.

In relationships even without a health issue, sometimes the greatest challenge and fear can be admitting vulnerability and/or dependence on someone. It is the reason so many relationships die; because one or both people cannot bear to be their authentic self in front of another without fearing rejection, ie, if you know too much about me, you will not possibly be able to love me. If I show you my authentic self, you will then have the power to hurt me. All the more reason why caregivers and partners absolutely have to bare their souls about this stuff. Because you ARE vulnerable, you DO need someone, you CAN'T always do it on your own. Both of you.

For parents, the situation is a little bit different. Obviously you don't want to burden your kid with your fears, and in fact, I would caution against it. Certainly let the child know that it is okay for him to be frightened and sad and angry and frustrated; let him know that he doesn't have to pretend to be happy in order to not worry you (because even little kids will hold back if they perceive that something might hurt mommy). But you, dear parent, will have to lean on your partner or friends or a support group for strength, because your child will need you to maintain the illusion that mommy and daddy are not frightened for him. Even if you are scared spitless, your particular parental challenge will be making your child believe that while he can be as scared as he needs to be, you are 100% confident that he will be fine. Children need certainty, especially from their parents. He will have enough doubt for all of you; you must be the rock on which he stands. Express any fearful and angry feelings you need to, just not to your child.

Having said all that, it is important to emphasize that all is not lost. Yes, life is different than you imagined. But does it have to be worse? Only if you make it that way. Grieve The Life you Imagined so that you can embrace The Life You Have. There remains limitless joy, boundless happiness, infinite love, tremendous possibility even after a diagnosis. You simply must open your eyes to see the joy, happiness, love and possibility where they exist. They may not look like what you used to think they'd look like, but they are there. The real tragedy is not the diagnosis and its challenges, it is the failure to see all of life's wonderful possibilities that still exist amidst the grief.

Some Details on AA and MDS: Here Comes The Science...

Courtesy of our friends at the Canadian AAMDS Foundation:

What are Aplastic Anemia and Myelodysplasia?
Aplastic anemia is a rare but extremely serious disorder that results when the marrow fails to produce blood cells. Aplastic anemia may be either acquired or inherited.

Myelodysplasia is similar to aplastic anemia in that production of blood cells is decreased; however, the blood cells which are produced in myelodysplasia may not function properly. Aplastic anemia patients who do not receive a bone marrow transplant may go on to develop myelodysplasia which, in turn, can progress to leukemia.

How Common?
Aplastic anemia is a rare disease. It is estimated that there are 2 to 12 new cases per million population per year. It occurs in both adults and children. Myelodysplasia is more common, with the majority of patients being over the age of 50.

The Function of Bone Marrow
The central portion of bones is filled with a spongy red tissue called bone marrow. The bone marrow is essentially a factory producing the cells of the blood: red cells that carry oxygen from the lungs to all areas of the body; white cells that fight infection by attacking and destroying germs, and platelet cells (platelets) that control bleeding by forming blood clots in areas of injury. Continuous production of blood cells is necessary all through life because each cell has a finite life span once it leaves the bone marrow and enters the blood:

* red cells: 120 days;
* platelets: 8 - 10 days;
* white cells: one day or less.

Healthy bone marrow is a superb blood cell factory and supplies as many cells as needed, increasing production of red cells and platelets when bleeding occurs and of white cells when infection threatens.

When bone marrow cell production fails, normal levels of red cells, white cells, and platelets begin to fail. Bruising, bleeding, infection, tiredness, pallor, and other symptoms of anemia may develop.

What Causes Aplastic Anemia and Myelodysplasia?
Although a congenital chromosomal abnormality may predispose one to develop inherited aplastic anemia, the medical community does not know the cause of most cases of acquired aplastic anemia. Certain toxic chemicals, medications, viral infections and radiation exposure appear to cause both myelodysplasia and aplastic anemia, but millions of people with exposure to the same factors do not develop either disease.

What Can You Do To Help?
*Donate blood and platelets
*Register as a bone marrow donor. It takes only a painless blood test to register, and you most definitely could save someone's life.
And now that stem cell transplants are becoming more common than bone marrow transplants, the process of donating is more painless than ever.

Thoughts to Ponder

"Illness is the most heeded of doctors: to goodness and wisdom we only make promises; pain we obey."
---Marcel Proust

In spite of illness, in spite even of the archenemy sorrow, one can remain alive long past the usual date of disintegration if one is unafraid of change, insatiable in intellectual curiosity, interested in big things, and happy in small ways.
---Edith Wharton

Life is like a game of cards. The hand that is dealt you represents determinism; the way you play it is free will.
---J. Nehru

The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing, and face us with the reality of our powerlessness, that is the friend who cares.
---Henri Nouwen

When I hear somebody sigh that Life is hard, I am always tempted to ask, Compared to what?
---Sydney J. Harris

Give sorrow words. The grief that does not speak Whispers the o're-fraught heart, and bids it break.
---{The Tragedy of Macbeth, IV, iii) - Shakespeare

Do not let your fire go out, spark by irreplaceable spark, in the hopeless swamps of the approximate, the not-quite, the not-yet, the not-at-all. Do not let the hero in your soul perish, in lonely frustration for the life you deserved, but have never been able to reach. Check your road and the nature of your battle. The world you desired can be won. It exists, it is real, it is possible, it is yours.
---Ayn Rand

Health Links

AAMDS Foundation

National Institutes of Health

Aplastic Central

Mia Hamm Foundation

Bone Marrow Foundation

Aesthetic Health

Are you as sick of people commenting on your pallor/weight gain-loss/overall appearance as I am? Well-meaning people can be incredibly rude. More dangerously, they can rob you of your positivity and good spirits. There are days when I feel great, only to have my bubble burst by someone who feels compelled to tell me: “you need a tan! It’s August!” “Wow! You are so pale!” or my personal favorite, “You look tired.” It creates worry, forcing me to wonder if maybe I should feel sicker than I do, based on nothing more than their opinion of my appearance. I wonder if my counts have perhaps dropped and they have noticed something I haven’t. To be sure, we can’t really stop the rude ones from commenting, but we can take evasive action to feel and look our best so that their comments will be less likely and will have less impact.

EP’s Beauty Tips for Fantastic Aplastics:

1) Mystic Tan. Hands down the best money I have ever spent. Seriously. For anyone who is looking for a little pick-me-up, this is the thing. Your spray tan booth may go by a different name, but trust me: you will never spend a more worthwhile dollar in your life.

If you are not so much of a get-nekkid and stand in a booth kind of person, may I recommend Elizabeth Arden self-tanner? It’s about $20 a bottle, but it’s the most natural-looking tan I’ve had out of a bottle (and I, your humble servant, have tried countless…). For everyday use or for special occasions, it can give you just the right amount of healthy glow to carry you through social situations where you want to look as “normal” as possible.

2) Origins Pinch-My-Cheeks. Wow! This is the BEST invention since epo, neupo, cyclosporine and stem cell transplantations. It comes in a tiny silver tube, goes on smoothly, and gives you (even men) a nice rosy-cheeked look. I apply it to cheeks, nose, forehead and the tops of my hands for a natural look. It looks especially fantastic over the self-tanner. You’ll never need blush again. It goes on and stays on till you wash it off (which also means that you need to wash your hands after applying it, or use a makeup sponge to avoid red fingertips).

3) Another fantastic rosy cheek faker is BeneTint cheek stain. It is more liquid than Pinch My Cheeks and therefore better if meds are giving you dry skin issues. This stuff ROCKS. I put it on under a little foundation, then add some more from the apples of the cheeks to the hairline. It also works on those pale pink lips to make them look more normal. I got mine as sephora. If there isn't one near you, go to sephora.com.

4) Revlon glowtion. Perfect for those red, veiny eyelids that invite those “you look tired” comments. Apply with a light hand some eyeliner and mascara, and your eyes become the natural-looking focal point of your face.

5) Red lipstick. Warning! You must go to a good department store or cosmetic store and have a reputable person choose the right shade of red for your skin tone. Do NOT think you can do this alone; it can easily turn into a disaster of red-light district or barnum-and-bailey proportions! I was gifted by a lovely woman a splurgey orange-based red from Chanel, which brightens my whole face and gives me that Gwyneth Paltrow-Nicole Kidman-Insert Name of Fair Skinned Celebrity feeling. Be sure to minimize the eye makeup when wearing this lipstick; pick eyes or lips to enhance but never both.

6) Neutrogena Oil-Free Acne Face Wash. If your meds are causing high school-worthy zits, head straight to the drug store to buy this product. It is the wonder cleanser. Don’t waste your cash on expensive or harsh formulas. This cost me about $4. Whatta bargain! Remember: clear skin, whether pale or otherwise, is always a healthy look.

Emotional Health

Dealing with an illness is hard enough. Let’s add to the mix Dealing with Family, Dealing with Friends, Dealing with Work or Dealing with School. Sounds like a party, right? Some tips for managing the multiple stressors that these interactions can present:

1) You are not the disease
Don’t let your focus become the disease. Don’t let others do it to you either. You are a whole person with interests, goals and dreams. Let loved ones know you appreciate “How are you?” but not necessarily “How’s your health?” or “You’re looking tired” or “Are you sure you can do that?”

An important corollary to not becoming defined by the disease is limiting your urge to troll the internet for every single shred and nugget of information you can find on aplastic anemia. Seriously. We’ll give you a break if you are newly diagnosed, but beyond a certain point it is counterproductive to so thoroughly immerse yourself in the literature that you are constantly comparing yourself to external factors. This is not to say that I don’t love that you are here and want you to come back often! But take a break from the hunt for information. If you need some encouragement to give up the habit, click on the links on this site for some Absolutely Guaranteed To Not Discuss Aplastic Anemia web sites. Click it. Think about something else. You know you want to.

2) Stay Interested and Engaged
Keep memberships you had before the diagnosis. You may have to change the type of participation you have, but don’t lose those important social connections. You need diversion and a sense of purpose beyond surviving a disease and not feeling sick. Make yourself go even when you don’t feel like it. Trust me; getting off the couch is 90% of the battle. Some fantastic organizations and resources for getting involved in whatever way you may be able to participate:
• http://www.meetup.com
• http://www.nationalexchangeclub.com

• http://www.freedomcorps.gov
• http://www.volunteermatch.org

3) Your life story is your own
Determine who needs to know what about your condition. Employers and schools will most likely need to know about planned absences for appointments or “bad days.” Friends love you and will want to know how they can support you. Family will need to know for obvious reasons. However--YOU decide whom you want to tell, and what level of detail to tell them. It is YOUR story to share, no one else's. Remember that not everyone needs to know if you don’t want them to. Don’t let others “out” you. This happened to me several times until I simply asked that my health not be considered dinner table discussion any more than anyone else's physical ailments (fibroids or hemorrhoids, anyone?) might be discussed publicly. People mean well, but it is your life and your story. And, going back to #1, your defining characteristic is not the disease.

Remember:

One's dignity may be assaulted, vandalized and cruelly mocked, but cannot be taken away unless it is surrendered.
--Michael J. Fox, in "Saving Milly" by Morton Kondracke

ABOUT E

I have just edited this post to remove all of the blahblah about when I was diagnosed, with what, and all the meds I have taken, do take, will take, and all the procedures, drug trials and treatments I have undergone.

I realized that that information is precisely what you will find on any other "I have a disease" web site, and I am nothing if not determined to make this site about more than that. Not that there's anything wrong with that! ;) But I just want to do something different with Fantastic*Aplastic.

Let's just say this about my health: I know that I am standing on the shoulders of giants, in my family, in the medical community, in my friendships. With all of the sadness, challenge and loss that comes with having a disease like Aplastic, I know that I remain incredibly lucky. And so are you, no matter what disease you are facing and no matter how long the odds.

This site is about positivity; about accepting that life has handed you not a bright yellow lemon, but a big stinky turd of a health challenge. So here at Fantastic*Aplastic we are gonna make some turd sandwiches. {I know. You'd prefer lemonade}.

What I'm trying to say in my usual scatological way is this: Let’s make the most of what we have to work with, working to stay as healthy, happy and positive as possible within whatever limits we have.

I hope that this site gives you some laughter, some ideas, and a great deal of hope. You are not at the mercy of external forces, and you are not alone. You have more power over your life than you think possible, and you can always come here to remind yourself of that fact.

Si, se puede. Yes, it can be done.