We Are Not Our Disease

I have been looking for a condo for a couple of years. I’m an empty nester, divorced, and living alone in a house that is too big for me.

Facing changes

Part of the problem is the market and part is that I don’t want to leave my home. It’s a historic house across from Mount Holyoke College, in South Hadley, Mass. The college and its walking trails are like my back yard. The historic house, built in 1848, boasts a copper roof and beautiful wood floors. It’s where I raised my three children. Now there are three empty bedrooms which I occasionally use for laundry-folding. One serves as the guest room or the room where a kid stays when he or she visits.

Dealing with other people

A mortgage broker explained that we baby boomers are all looking for the same thing: single-floor living. The demand isn’t meeting the need. I have the added requirement of needing to have my Labrador Retriever -- my emotional support animal –– with me.

In a recurring nightmare, I have sold the house. I am sooooo upset. I look at it from afar. I want it back but can’t have it. I am living in some crummy place.

My realtor wants me to find that condo so she can sell my house. She’s been frustrated when I have passed on a couple that she thought I would love. I recently saw one that had potential. It was very sweet and -- a major selling point –– it had a fenced in yard for the dog. I didn’t love the street it was on. Some neighbors came over to chat at the Open House. They said that since the condo is very close to a hospital, the sound of sirens often wails through the night. I’m from New York and don’t mind that sound, but since I am living in the country, I would rather have the quiet at night.

Seeing me only as a cancer patient

My realtor, meanwhile, thought that being near the hospital would be an asset for a blood cancer survivor like me. She knows that I have chronic health problems stemming from my four stem cell transplants.

“Don’t take this the wrong way,” she said.

With that kind of warning, you know it’s not going to be good!

She said that it would be convenient to live so close to a hospital. Because If I needed blood work, I could just walk over and get it.

I took it the “wrong” way.

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She probably didn't mean to demean me

Did she think that you can just wander over to any hospital to get a blood draw? I’m sure she didn’t mean to insult me, but the statement made me think she saw me more as a patient than as a person.

Not too long ago, I was walking with a friend and our dogs around a lakeside path. We got to a patch of solid ice. I hesitated, then stopped. I tried walking closer to the wooded side and holding onto a branch. She asked if I needed a hand. I did. Then she asked, “Is it the neuropathy?” I know she was just curious, but I was surprised. Neuropathy makes many things hard, but walking along an icy path is hard in itself. 

We don't want to be known as a cancer patient

To boil this down to essentials: We blood cancer survivors are multi-faceted individuals who would rather be known for our individual traits than for our cancer history.

On the other hand (“I have five fingers,” a former editor said), I think we all hope for an understanding and acknowledgment that we have been through something tough. I don’t want to take up all the space. I feel uncomfortable if someone says, “I shouldn’t complain to YOU.” I tell them to please say what’s on their mind.

Don't dismiss our struggle, either

It's a delicate balance. I don’t want people to dismiss the gravity of the struggle, either. That’s what I felt my boyfriend was doing when he said, during a conversation about his complaints with me, “I have health problems too.”

I never said he didn’t.

I know what he was referring to. He has a precursor to a condition that is not life-threatening. It is like an ingrown toenail when compared to cancer. It can’t be easy to be the partner of someone with chronic health problems. I don’t want to take up all the space. But that false equivalency makes me as angry as the “you are your cancer” attitude makes me uncomfortable.

How about you? Do you ever feel like people see the disease more than seeing you as a person?

Or at the other end of the spectrum, do you feel like they minimize it?

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