WHAT EVER HAPPENED...? Germ Phobia

MYSOPHOBIA AND ME – THE GERMOPHOBE GIRL

As I stated at the beginning of my book, this debilitating fear of germs can practically ruin your life. I embarrassed myself, family members, and other loved ones when I behaved the way I did with this aspect of Obsessive-Compulsive Disorder (OCD).

I recently watched a documentary called “Howard Hughes Revealed” on the National Geographic channel. This show was excellent in making me feel better about my peculiarities around my past fear of germs.

It discussed Mr. Hughes’s multiple concussions and head injuries from plane crashes. It explained his many OCD behaviors that were exactly like the ones I experienced.

It brought tears to my eyes when it showed the times he had to layer tissues to be able to touch a doorknob…because there is a relative of mine who rarely speaks to me anymore, and I think it has to do with my bothering her in a public restroom in New York City when I couldn't touch anything without her help, many years ago.

I'm sure there's way more to her dislike for me than that, but seeing Howard Hughes struggling like I did brought back all the times I used to take her to Disney World and have so much fun with her. Now, I'm not even invited to big events in her life. My brain tumor changed our relationship. Forever?

As someone stated in this documentary, “The head injuries would tend to just make the OCD worse.”

My brain tumor caused this strange behavior of mine. The brain injury I now have due to that tumor causes other behaviors I have written about at length in this book.

I hope and pray that whoever loved Mr. Hughes was able to forgive him for what he suffered from. I hope and pray the same for me.

I need to list the many things I could not do and the new behaviors I did do because of this horrible brain tumor. I thank God every day that these behaviors are done for me, and I pray for the millions who suffer from them still…

Of course, having mysophobia does not mean that you have a brain tumor, but a brain tumor caused my fear of germs. Though my list of symptoms is due to an undiagnosed brain tumor, this list can apply to many others who have no tumor but have to live this life anyway. There are strains of this phobia. Some people wash their hands just a little more often than most people do. Others demonstrate many, or all, of the behaviors listed next. And sadly, I am pretty sure there are behaviors I cannot remember anymore or ones that affect other people, but did not affect me. Here's MY list:

·       Doorknobs: I wouldn't touch them with bare hands – always needed someone else to turn them for me or I had to find a tissue/paper towel/toilet paper to use. I even had to do this in my own home! Sometimes, outside my home, I had to kick some doors open, if I had nothing to touch the doorknobs with or no one to help me.

·       Toilet seats: I could not sit down anywhere except my own home, and even there, only sometimes. I used chemical wipes from my purse to clean all seats. I became a master at hovering!

·       Movies/church: I heard a DJ on the radio say there are two places that are never cleaned, so I stopped going to the movies for four years, and I stood at the back of my church until a sweet woman, Sandy, helped me by laying my coat down for me to sit on, a simple thing, but one I could not think of on my own back then. By the way, the church I go to – Grace Church in Lake Katrine, NY – does clean their chairs and pews, as does the Lyceum Theater in Red Hook, NY.

·       Clothing try-ons: I could not try on clothes of any sort that had been tried on by someone else. One store in my mall opened the gates early for me so I would go in the back room to try on clothes fresh from the sealed plastic bags.

·       Bras: speaking of clothes – the only bras I would buy would be sports bras because I sort of knew my size, and I would wash them in hot, soapy water with bleach before I wore them. . Right after the brain surgery, my mother took me shopping for real bras, and we made the other women in the try-on room laugh when I shouted, “Mom, my boobies are touching a dirty bra that someone else tried on!” I was so happy I was cured.

·       Hotels: if I had to go out of town for something, I packed an entire suitcase full of chemical wipes, hand sanitizer, toilet seat covers…. I even packed towels to cover carpets because I couldn't step on their carpets or even use their towels. [One of the too-many-to-count fights I had with Aiden was on the train trip to NYC when I packed this type of suitcase to clean my hospital room when I got there. Who gets mad at their loved one as they’re about to have brain surgery???]

·       Hot tubs/bath tubs: speaking of hotels---and even in my own home---I couldn't go into those because once I heard someone call a hot tub “a giant cesspool”. We all know how relaxing they can be, so this was a big loss.

·       Beaches: I could not go barefoot on the beach. This was terribly sad because I grew up going to the beach in Hampton Bays, Long Island, because both sets of my grandparents had houses there. I missed that so much!

·       Envelopes: I could not lick envelopes. I had to use a small dish of water with a paper towel to pay my bills, send birthday cards, etc.

·       Haircuts: I couldn't rest my neck on the sink at my hair salon. God bless Lisa Smith, who helped me through this, visit after visit, at J.C. Penney. Lisa is also the first person who washed my hair when I had this huge scar on my scalp after the 42 staples were removed from my head following brain surgery.

·       Doctor appointments: I had to have doctors’ tables covered completely in order that I could sit down undressed on them. Those thin pieces of white paper were never wide enough, so nurses in various offices had to help cover the area completely. I made doctors wash their hands in front of me and to use gloves to touch me. I thank Dr. Keller at Hudson Valley Foot Associates because he was so sweet about this annoying request. Another doctor – who will remain nameless – laughed at me and refused to do it. Any doctor who can laugh at a sick patient is heartless. Another doctor, who will also remain nameless, didn’t wash his hands after he used his restroom that was right near his waiting room. I had heard him urinate, flush, and open the door. I told him to go back in and wash his hands. His staff clapped and smiled at me when he did what he was told to do by this patient.

·       Floors: I mentioned floors in hotels before, but I even had trouble in my own home. I could never go barefoot. I wiped my feet down with wipes before I got into bed each evening. When workers came to the condo to repair heaters and washing machines, etc., I made them take off their shoes and walk on the plastic I had put down before they arrived. The guys from Lowe’s Plumbing and Heating and Air Conditioning in Kingston, NY, were extremely considerate and cordial to me.

·       Cars: after each trip, I wiped the entire front two seats of my car down, using the chemical wipes. I also cleaned the steering wheel and the shift lever after each time I drove. I had to sit on a towel whether I was in my car or in someone else's car. This became truly necessary when the undiagnosed brain tumor caused frequent wetting “accidents” while sitting. Again, these wetting incidents were blamed on my meds, but I found out later they were another sign of the undiagnosed tumor.

·       Friends’ visits: I rarely allowed anyone into my condo. This wasn't because I was messy. It was because of how exhausting it would be after they left, as I would have to scrub down everything they had touched. My friend Marian would lay paper towels everywhere in her house for me to sit on when I visited there.

·       Shopping carts: nowadays when you go to many stores, there are wipes available for you to use to clean the cart before you load it up. I feel sometimes as though I helped that idea along because I did this long before stores offered those wipes. I carried my home wipes into each store and wiped my carts right away. Because I had memory problems due to the tumor, I sometimes forgot the wipes. Then I would hold my sleeves down from my shirt or coat and hold the cart handle with my sleeves instead of with my bare hands. Also – I NEVER put anything into the spot where babies are put, because of what “remnants” might be left there from a dirty diaper.

·       Shared pens: when I was at a bank, doctor’s office, or anywhere else where pens are shared, I always had to dig through my heavy purse for MY pen. If I forgot it somewhere, I had to find a tissue or napkin to hold a pen touched by others.

·       Soap: I could only use soap that was from a pump dispenser. I could never touch a bar of soap, even a new one.

·       Microphones: I could never hold a microphone. When I sang karaoke when I first met Aiden, I had to wrap napkins around the mic so I could focus on the song.

·       Straws: I could never sip a drink from a glass, cup, can, or bottle. I HAD to have a straw for each thing I drank. That was very dangerous with hot tea or hot chocolate!

·       Faucets: I could not touch any faucets either at home or out and about. I turned them on with a tissue, paper towel, hand towel, or toilet paper, and then did the same to turn them off.

·       Phones: all telephones had to be wiped with chemical wipes before and after each use.

·       Remotes: if I was home or at a friend’s house, I used a remote control for the television with a paper towel, so I could touch the buttons. If I was in a hotel, I wiped it down repeatedly with chemical wipes.

·       Escalators: when I went places like malls, airports, and others where I needed to ride on the escalator, I couldn't hold the hand rail, so I had to be very careful not to lose my balance. I had – and still have – balance problems.

·       Elevators: I could not touch the buttons in an elevator, so I would ask someone else to do it for me, if there were others riding at the same time. If I was alone, I touched the buttons with my knuckle. After I did that, I scrubbed my hands with sanitizer, which was always attached to the outside of my purse or was in a pocket of my clothing. I lost the skin on my knuckles because of the overuse of hand sanitizer. I had to use layers of Band-Aids to cover my exposed skin.

·       Church: I already explained about not being able to sit in a chair or pew without help. But, I also was not able to take communion. When the communion basket was passed, with the symbolic body of Christ, I took one wafer to look as if I was participating. As the ushers went around the whole church distributing the wafers, I talked to myself silently and tried to convince myself the hands that laid that wafer into the basket were clean, so I should swallow it when the pastor indicated. I never could.

Also – I wrote earlier about “licking” envelopes by using water and paper towels at home. At church, I would put my money in the offering envelope but then would ask whoever was sitting next to me to lick it closed for me. If I was alone, I put an open envelope in the basket and didn't worry if my money fell out, as long as I hadn't had to lick the envelope closed.

·       Laundromats: before I lived in the condo where I live now, which does have a washer and dryer, I rented an apartment that did not. I had to bring my laundry to various public places to wash and dry my clothes. I brought my chemical wipes and wiped down each machine I was about to use, so no one else's germs would get on my clothes. This caused a few stares by others, probably wondering what was going on with me.

·       Shopping: I spent approximately $1000 per month on cleaning supplies. Some of those supplies I used to wipe down the packages holding those exact same supplies I was going to use. I couldn't touch any container of anything from the store before I scrubbed it over and over with the wipes. I shopped at Stop & Shop in Rhinebeck, NY, where the staff there was very sympathetic when they observed me load an entire shopping cart full of cleaning supplies each week onto the conveyor belt to be scanned. When I was cured of this nonsense after my brain surgery, I went to the store and told them what had caused it all. I got smiles, hugs, and warm comments from the various people who worked there then. To this day, I get asked how I'm doing whenever I shop there (now called TOPS) for the “normal” shopping cart items.

·       Condiments: I was unable to touch salt and pepper shakers, sugar dispensers, etc., in restaurants. Whoever was eating out with me was asked to do that for me. If I was eating out alone, I skipped using anything I typically enjoyed. At home, dispensers were washed oh-so-frequently. [I was reminded by my friend Marla that I wiped down things in restaurants with hand sanitizer.]

·       Shelves: in my own home, I could not lay food, plates, clothing, and/or towels on bare shelves. I had to scrub them down with chemical wipes and then lay coverings on all shelving. To this day, some of those coverings are still on my shelves only because piles of stuff are on top of them now. When I move out of my current place, I'll smile when those coverings get thrown in the garbage, rather than taken with me to a new place.

·       Gasoline pumps: I was unable to pump my gasoline without gloves on. If I had forgotten the gloves, which sometimes happened because they were in and out of my car so often to be washed, then I used napkins or tissues to hold the pump. When I got back in my car, I scrubbed my hands over and over with hand sanitizer. To this day, I wash with that after each gas pumping episode, but now it's only to get rid of the smell of gas on my hands.

·       Airports: though at this writing I no longer fly, because when I do the pain in my head is excruciating when the plane goes up at liftoff and down for descent, I know that before my brain surgery, I had a very difficult time in airport security lines due to the mysophobia. I always had to remember to bring extra socks so that when my sneakers had to be removed and I stepped on airport carpeting in my socks, the clean second pair of socks could be put on after I cleared security. I would not put the socks that had touched the carpet back into my sneakers. They went into the nearest garbage can.

In the airplane, I had to scrub down the seat, seat belt, and food tray with chemical wipes before I could take my seat. Of course, this was annoying to those trying to get to their seats who were in line behind me. I am pretty sure I bothered a lot of people who just wanted to get settled so the plane could be cleared for take-off.

When we first sat down, I had to wipe with my chemical wipes the instruction card in the seat back ahead of me. I always followed along when the flight attendants went over the safety procedures, but until the cards were cleaned, I couldn’t touch them. I kept thinking about the dirty hands that had touched those cards before me, instead of concentrating on what to do if there were an emergency. Most of the time, I saw others ignoring this routine, but I am such a teacher, I had to listen.

I always had to have a window seat with Aiden sitting next to me. I could barely tolerate his arm touching mine, so I could NEVER rub elbows with a stranger. We all know how crowded airplane seating can be.

I always had to wear a hooded sweatshirt no matter what the temperature was, because I had to put my head into the hood before I could let my hair touch the headrest.

When the flight attendant came around for our drink orders, I was adamant that I needed a straw with my soda, because I could never drink directly from a can or plastic cup. If she or he forgot to give me a straw, my drink just sat on the food tray in front of me until the clean-up began.

During the flight, I used more chemical wipes to clean the buttons on remotes for the TV screen or for seat adjustments. If the person sitting in front of me moved the seat back to get comfortable, I jumped, because I was so scared of the seat being too close to me.

If, heaven forbid, I had to use the restroom on the plane, my chemical wipes went with me so I could clean off the door latch, toilet seat, and faucet. It’s quite an accomplishment to tinkle while hovering over a toilet on a bouncy plane flight, but I could do it. And that saying, “If you sprinkle when you tinkle, please be neat and wipe the seat” was done by me with such finesse.

·       Garbage duty: I would not take out my own garbage. Many friends came over to help me dump my wastepaper baskets into plastic garbage bags, and then they brought the bags out to the dumpsters.

·       Housecleaning: I could never go near the vacuum cleaner or dust cloths for fear of germs, so numerous friends helped me with that, also. This seems very odd to me now, because you would think I would have loved to get rid of the dirt and grime. But, I couldn’t do it. Thank God for friends!

·       Brushing teeth: I had to wash my toothbrush each day with soap and hot water before I put toothpaste on it to brush my teeth. I purchased several new brushes often.

·       ATMs: I couldn't touch buttons on an ATM machine without much deliberation. Sometimes, I did my bank transactions with my knuckles. If my knuckles were covered in bandages due to lost skin from too many chemicals used to clean my hands, then I used a pen or pencil from my purse to push the buttons. All of this caused mistakes.

·       Restaurants: if a waitress or waiter held my teacup by the part where I would sip from, instead of the handle, then I couldn't drink it at all. Too many staff put their thumbs and fingers where mouths go.

A funny story I can write about is that when I was being checked out of NYU Medical Center (July 10, 2009 – only three days after brain surgery), my sneakers got “lost” in all the confusion of that process.

My sisters were there to say goodbye before they traveled home to Florida. Aiden was there to drive me home (because the doctors said I shouldn't ride a train yet), and Aiden's friend was outside in Aiden's car trying to stay out of trouble with respect to parking regulations.

So, when it was time to get out of the wheelchair that had rolled me to the front door, I walked on a New York City sidewalk in my socks only. I laughed hysterically, since just a few short days before, I lugged an entire suitcase full of cleaners into the hospital so I could clean the room entirely before I even undressed.

Now, I was parading around a filthy city sidewalk with only a thin pair of socks on and loving every minute of it! I was smiling, and getting into Aiden's car, thanking God that the fear of germs was FINALLY over! I had made it to the “other side” and I was so radiant.

Many people have called my story a miracle. What I think is truly inspiring about it is that it's one more example of getting through whatever life hands you. You can do it. Don't give up. God never said it was going to be easy. We all have situations and circumstances that are tough to take. But, getting to the other side of them makes you all the more joyous and fulfilled. I'm glad that I've lived to tell my story.

I know that prayer works. Once, when I traveled to Boston, Massachusetts, for a conference to hear preacher Joel Osteen speak, mysophobia was taking over my life. I couldn't even sit in the bleachers without covering the seats with something because I got upset with myself on the ride there that the pants I wore were made of too thin material and the germies would touch me.

I told all this to a woman working there selling Joel's books. She told all the other workers to stop selling and circle around me, don't touch me, and pray. They did just that, and I was able to calmly return to my seat and listen to God's message from Joel.

I know there are some people who don't approve of God's word being spread in this way. But I believe I've come closer to God because of speakers like Joel. His workers could have just kept on selling, but they didn't. They talked to the Lord. Two or three years later, I was free of this phobic chokehold. Amen.

          As I was putting the “last leg” on this chapter, I met a couple of friends for lunch. Of course, we discussed how it was going with this book.

We all had an amusing chat about my peculiar habits years ago when I was petrified of germs. I remembered some of the crazy behaviors they brought up.

But, then one of my girlfriends said something that I don't think I ever knew. She told me that I lost a lot of friends because of my behaviors when I had mysophobia.

That shocked me because I didn't even realize that was so. I was so shook up by that information, I didn't even ask who she was referring to.

So, I decided the way I would wrap up this chapter is to apologize to anyone I may have offended, upset, bothered, etc. when I behaved irrationally. We now know why that all took place (my brain tumor), but hopefully, whomever I've bothered, I hope they can let it go. I have to say, I still have a wonderful amount of friends who have seen me through this. Those of you who couldn't, I get it.

And to those of you who can relate to this list, do absolutely everything you can to get better. Life is too short to obsess about germs!

[A very humorous incident happened as my editor and I were proofreading my manuscript. It took place at a restaurant one night when I “ran away” from the stress caused by all of this work. The waitress had inadvertently thrown away my wrapped-in-foil leftover garlic bread with cheese. When I noticed what she had done, I retrieved it from the bucket of dirty dishes the busboy was about to bring back to the kitchen to wash. I just had to get it back, as it is the best appetizer I have ever had. Obviously, I could NEVER have dug through dirty dishes before the brain operation! So, those of you who suffer from mysophobia, I hope you will have a story like this to tell someday yourself.]

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For the coming year, I will be excerpting, weekly, material from this fine book by Janet Johnson Schliff, M.S.Ed.. She wrote it over a three-year period, with some coaching and editing help from me, through my business, WriteYourBookWithMe.com. The excerpts are from the almost-final version. The memoir is now available in paperback and ebook formats from amazon.com and from its publisher, outskirtspress.com: 

What Ever Happened to My White Picket Fence?

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BOOK TALKS AND SIGNINGS

Janet Johnson Schliff was on WKNY  Radio 1490 at 9:10 a.m. on Thursday, March 1, Kingston, NY.

Janet Johnson Schliff spoke at 1 p.m. on Saturday, March 3, at Barnes & Noble, 1177 Ulster Avenue, Kingston, NY.

I attended, along with almost 40 other people. The talk was especially well received, with several questions at the end, as well.
Congratulations, Janet!

Janet Johnson Schliff spoke at the Starr Library in Rhinebeck, NY, at 7 p.m. on March 6. 

She spoke at the Golden Notebook Bookstore in Woodstock, NY, at 2 p.m. on March 17. 

She is speaking at the Morton Library in Rhinecliff, NY, at 6:30 p.m. on March 28. 

She will appear at RCAL in Kingston, NY, at 4 p.m. on April 3. 

More signings will be coming up, and a feature about her by John DeSantos [845 LIFE] appeared in the Middletown Times Herald-Record on Monday, March 12, as part of Brain Injury Awareness Month.