So…This Is Retirement?

Well, Mike (my husband and rock) has been retired for just under two months and I’ve never felt busier! Oh, I’m still chronically dizzy. I’m still dealing with my multitude of other diseases or disorders but I haven’t moved this much since before my Vestibular Disorder. Mike has been…shall I say, encouraging me to accompany him on all the errands he used to do alone, all of them. By doing so, I came to the realization that when I was diagnosed, I just stopped movement, period. Not that I was bed bound, although I do spend a lot of time in my bed, but I found moving around was so difficult, I made my new routine to remain still as possible. My furniture arranged so I have something to touch as I wobble through my house. As a retired COTA, I knew I needed to move to assimilate/improve my balance but doing so made me feel awful. My first errand was to the grocery store (my nemesis), which was once a happy place for me, but I survived.

Armed with one walking stick and my husband’s arm, I strutted into the store. Well, I thought I was strutting my stuff as we entered the store. Whoa! Get me a basket quick because I was taken aback by the stores two story ceilings and the vastness of the space. I draped myself over the basket and got my bearings. Ugh, this is exactly where I stopped with my VRT, partially due to our daughter’s accident in 2005 and partly because…it’s HARD! I’d left off my home program of VRT with this exact task, going to the grocery store, to work on head turning while scanning up and down. So, with list in hand, we took off to buy groceries. I was grateful I’d made a list because brain fog set in quite quickly.

All these years, Mike has done our grocery shopping, I just gave up. This was a huge task as my first since we were restocking the pantry. I did okay with the visual scanning but when I stepped away from the safety of my basket, I had to think out and plan every single step, with the idea of falling a constant in the back of my mind. I wore my sunglasses inside, partly because of the noxious fluorescent lighting and partly because it kept me from making eye contact with others out of embarrassment. Ugh! Everything seemed to take so much effort, I was so over it but no, there was more on my list… I was so mad at myself for picking such a task but my anger came out on Mike, my love, my rock… Why?

I began this now ordeal, feeling kind of cocky but now felt defeated, exhausted, emotional, dizzy, and angry. This is not a pretty side of me. I disappoint myself when I go to the point of lashing out from this kind of stress. I tried blaming Mike for ‘making’ me go with him. Really? I was grasping at straws, not wanting to take responsibility for my choice to go on this errand. Mike remained calm and didn’t engage. He just let me rant for a while, actually, it was all the way home. There had to be a lesson in here somewhere. Once I was home and in my bed, I had time to think. A hilarious movie we love came to mind. It’s called What About Bob? starring Bill Murray and Richard Dreyfuss. Murray’s character has difficulty ‘managing’ his life and a therapist (Dreyfuss) suggests his theory of taking ‘baby steps’ to conquer his fears. THIS was my lesson! Baby steps!

Here’s what I decided I could have done differently:

  1. Pick a realistic task! This was such a huge task to choose as my first. Remember, Margaret, baby steps!
  2. Make sure you are in good operating order. Eat before and bring water.
  3. Make lists! I assure you, ‘brain fog’ is real and you may walk out without the things you need and a bunch of stuff you don’t.
  4. Take a break if you can. Some stores have benches, usually in the pharmacy area here
  5. If all else fails, there’s always tomorrow!

How Do Dizzy Moms Survive Raising A Child?

I don’t know how many of you are dealing with a Vestibular Disorder and a baby but somehow, I am back in that mix. Americans have created a new ‘norm’, grandparents raising/keeping their grandchildren. Some grandparents do it because their choice is, raise the child or loose them to the ‘system’. Mine was a choice, sort of… Mike swears it was my choice but that’s not quite how I remember it…not unusual in our marriage. I found myself, back in time somewhere recently. A time before I found my voice, when I didn’t or couldn’t say, “NO”!  Mike and I were on our last day of a long over due vacation this past Summer. Our daughter Sarah, called us in a panic! There had been a ‘snaphue’ with her childcare located at her work place. If she’s in a panic, then I become panicked, not the best mom trait I realize. It is just part of my PTSD and if I’m honest, I am a ‘problem fixer’. While in this (out-of-body) state, I apparently agreed to keeping our new granddaughter until the ‘slot’ opens! Brain fog, I tell you! What did I get myself into???

In reality, Mike is doing more than me, I could NOT do it alone. I am sure there’s a dizzy mom (or two!) reading my blog and they understand what I am saying. How do YOU do it? I give you mothers’, doing the immense job of raising a child while dealing/living with a Vestibular Disorder, a standing ovation! Here’s an example of our new typical week We get up at 6:15 am to be ‘ready’ for Olivia (put on a robe?) at 6:30 am.  It’s a mad rush for us just to get to go to the bathroom and make coffee (must have coffee!) before she comes. Sometimes, it’s an ‘either’, ‘or’ situation. Occasionally, we actually pull it off. Sarah is very prompt and after a quick hand off, Olivia is ours for the next 10 hours, yes, TEN hours! Mike continues working nights and I continue waiting up for him. We are now getting 4-6 hours of sleep (just like a real mom) then, trade-off catching naps.  I have to get sleep or I will have a flare of Fibromyalgia (ME! ME! ME!). When does Mike get any sleep? Usually while holding Olivia… Some days, I am able to ‘let’ him sleep for more than a few hours (aren’t I generous?). It just depends… and that SUCKS!

Do I regret ‘making’ this decision? Not at all but doing this while dealing with a Vestibular Disorder totally changes the experience. When Olivia was an infant, I rarely had problems as it was all feedings, diaper changes, and gazing at her while she sleeps. I hold her in my lap ‘croaking’ out show tunes from ‘My Fair Lady’, all the usual childhood songs, 1,2,3’s, ABC’s, etc. She is a ‘normal’ baby, so this stage didn’t last long. She quickly learned to roll, twist, turn, pivot (all developing her Vestibular System!) and before we knew it, she was sitting, then quickly mastered crawling. Now, she’s trying to walk! In reality, Mike and I were able to see all her ‘firsts’ and watch her huge smile go from being just toothless gums to now having 5 (going on 6) teeth!

Among her favorite things, turning her head upside down, similar to the Downward Dog Yoga position and I can’t do that simple thing… she loves throwing herself backwards while sitting in our lap (better have a good hold!) and look at her world upside down. I can’t do so many simple, silly, and fun things that I could before I acquired a Vestibular Disorder. I know I’m not alone in this… I know also, I have accomplished some things I thought I couldn’t. Keeping a baby is one of those things and it’s a fantastic form of VRT, also. I’ve tried laying on my back, flat on the floor with her but it always made me dizzy. At least I was already on the floor, where was I going to fall, then? I modified this play activity by stacking pillows to raise my head to my optimal position and I could do it. I wasn’t laying actually flat though…

This time will soon end for us, when she begins daycare. Will I miss her beautiful face and her giggle, and her chubby legs and precious little fat feet and…? Of course! We will still see her every weekend. I envision myself being a ‘better’ Memaw because I won’t be the Zombie I/we have become.

I’m Team OT this Time Around…

I’m not sure if it’s because VEDA has their upcoming Balance Awareness Week (September12-18), or if I am making an experiment of myself, but I’m going to whole-heartedly do VRT, again! Yes, again, after these many years! This time, though, I’m applying what I knew best, Occupational Therapy Based VRT. I’ve pulled out resources and this is my plan (do not do this yourself!), I look at my ADL’S or Activities of Daily Living, which simply put means, what do I do in my daily living (showering, housework, cooking, etc.). A great example would be the loading/unloading of my dishwasher. I have to visual scan what is in there and Motor Plan where and how to complete this task. I know I’ll get dizzy if my head inverts (upside-down), so I incorporate a squat to keep my head in a more neutral position. Raise up, turn body in the direction needed (still having trouble with quick head turns). I have to tilt and turn my head in putting away my dishes. It’s all done very ‘mindfully’, I really need to concentrate on the activity. I’m lucky, my kitchen is a Galley style (two sides facing each other), so there’s not much area to take a fall. I always think about my fall risks, as I’ve broken seven bones. Below, I’ve listed the areas an Occupational Therapist evaluates. As you can see, it does involve every area of one’s life, even Sexuality and Spirituality! At my worst, sexuality was the last thing on my mind, but on a good day…I continue with amazement with all Occupational Therapy entails. I’m giving you some insight, there are options with VRT.

*This is NOT for you to ‘treat’ yourself, it’s simply for a look at another side of VRT.


Appendix 3. Examples of Impact on Activities of Daily Living

*Eating: leaning across a table to pass something

*Bathing: bending to reach the legs, feet, perineal area, closing eyes to wash hair

*Toileting: bending to wipe, bending to pull garments up or down, maintaining balance      while standing to urinate (males), twisting to reach toilet paper if behind toilet

*Transferring: sit-to-stand transfers from toilet, other seats

*Grooming and hygiene: bending the head forward to groom hair or brush teeth

*Taking medication: bending the head back to swallow medication

*Sexual activity: being in the superior position and weight shifting or moving the head rapidly; stability on water bed or other positioning furniture

*Sleep: head movements during sleep, changing sleeping positions, or maintaining the head in certain positions during sleep will elicit vertigo and cause waking, possibly nausea, and disequilibrium while groggy

*Instrumental Activities of Daily Living
Meal preparation, cleaning, other home management skills: Bending down, looking into  high or low cabinets or shelves, and tasks that require repetitive head movements may all  elicit symptoms. Task performance may be compromised or the task may be abandoned  altogether.

*Gardening, yard work: Tasks may be performed less efficiently or abandoned; falls may  occur on uneven ground.

*Vehicle care: Car washing and changing oil and filters may be difficult or impossible.

*Child, elder, and pet care: tasks that involve picking up and carrying loads, bending  rapidly, performing or assisting in transfers, diaper changing, cleaning up messes on floor

*Community mobility: Driving will be more difficult, especially under conditions of reduced visibility, and may be abandoned or performed only for limited errands.

*Shopping: Navigating stores, carrying packages, bending to pick up items, scanning shelves for items will be more difficult and may be abandoned.

*Safety: ascending/descending fire escapes and stairs, dim areas with only emergency lighting

*Play, leisure, social participation, religious activities: Visual motion sensitivity, difficulty kneeling, navigating in crowds, vertigo elicited by repetitive head movements or bending the head down; activities and rituals may be severely restricted or abandoned.

*Work, either paid employment or volunteer jobs: Symptoms elicited by a wide range of tasks will cause reduced efficiency and sometimes total inability to per- form some jobs, depending on task demands.

Appendix 4. Examples of Performance Skills Affected by Vestibular Impairments

*Posture: Standing balance is impaired in most people with vestibular impairments. People may tilt the head and/or body off the vertical. They may have difficulty attaining and maintaining upright standing. This skill is particularly difficult when visual cues are absent or decreased. Static head and trunk posture while seated are sometimes impaired; dynamic sitting balance may also be impaired.

*Mobility: Mobility skills are manifested as veering toward one side while walking, ataxic gait, and falling or stumbling, particularly on uneven surfaces. Load compensation skills are impaired. Clients may need to use light touch to improve orientation and stability.

*Coordination: Dual-task performance skill is decreased.
*Energy: Routine tasks take more energy than usual, and endurance is decreased.

Appendix 5. Examples of Performance Patterns Affected by Vestibular Impairments
*Habits: Skill components of habits may be disrupted, and performance efficiency may be reduced, increasing the cognitive load and increasing the difficulty of performing habitual skills that were previously easy to perform (e.g., basic activities of daily living may have to be performed with modifications).

*Routines: Due to effects on performance skills, routines are less efficient and may need to be changed or abandoned altogether (e.g., hair washing may require supervision for safety and may take too long in the morning before work, so the client’s morning and evening routines may be changed).

*Roles: Some roles may be reduced or even abandoned, with consequent detrimental economic and psychosocial effects (e.g., clients with Ménierè’s disease may have to leave their jobs).

Appendix 6. Examples of Context Affected by Vestibular Impairments
*Physical: The physical environment may require modifications for safety (e.g., installing bathroom grab bars), or the home environment may require significant change (e.g., removing throw rugs, changing lighting patterns).

*Social: Misunderstanding of symptoms and problems by family, friends, and significant others may lead to hard feelings, reduced participation in socialization, changes in preferred social environments. These problems may occur due to decreased self-confidence, fear of falling, and a history of falls.

*Spiritual: Falls, vertigo, decreased concentration, and decreased ability in dual task performance, which all lead to decreased performance in vocational and vocational activities and decreased participation in the community, can cause decreased sense of self-worth, self-doubt, and decreased joy in life.

*Virtual: Visual motion sensitivity may lead to avoidance of virtual environments.

Appendix 7. Examples of Activity Demands Affected by Vestibular Impairments

*Timing: Tasks may take longer than before.

*Space demands: Lighting, flooring, and support surfaces may have to be changed.

*Social demands: Reduced social interaction per task may be required due to reduced tolerance for auditory and visual noise.

*Required bodily functions: Reduced function of vestibulo-ocular reflex, vestibulospinal reflex, and reduced spatial orientation skills all affect functional performance.

Appendix 8. Examples of Client Factors Affected by Vestibular Impairments

*Mental functions: reduced attention skills, reduced ability for dual task performance

*Sensory functions: reduced vestibular function, sometimes reduced auditory function

*Neuromuscular functions: reduced postural control, reduced dynamic visual acuity, impaired gait

*Vestibular labyrinth: In some instances, structural abnormalities in the physical labyrinth may be present, but these features cannot be observed; they may only be inferred.

*The American Journal of Occupational Therapy

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You Just Have to Push Through…

My new routine began with that dang black and white fabric, and the red ‘X’. As I think back, it seems so ridiculous I’m laughing to myself right now, but it brought on panic attacks during this time period. I really needed my husband to cheer me on just to DO the exercises (did I say cheer or force?) and he was by my side. He supported me as both a cheerleader and physically (in case I fell off the chair!). I took anti-nausea medicine about 1 hour prior to a session as recommended. Then, (with wastebasket close-by just in case), I sat in a chair and began.

Initially, just looking at the pattern for a few minutes was all I could tolerate before Vertigo and Nystagmus set in. I gripped the chair seat and started swaying as I did them. Oh, and gagging, not sick, but gagging. The medicine apparently worked well in stopping actual throwing up, but it didn’t stop the gag reflex. Of course, I wanted to stop as soon as I started! My cheerleader reminded me what my PT advised. Actually, he threatened to call her and tattle on me…I’m sure in truth, I’d never had done them at all if Mike hadn’t ‘encouraged’ me so faithfully. A session lasted about 10 minutes at first and it left me exhausted! After about two weeks, I wasn’t making the progress I thought I should have. Was I expecting too much? I called my PT and put my case before her, “I’ve been trying to do these exercises and all it’s doing is making me gag…I get so tired after doing them…it’s harder than I thought…I don’t think I can do them…”. Okay, I whined it to her.

She listened patiently, then in her soft voice explained that ‘yes, I would be very tired after a session. Yes, they would be very challenging and I might feel ill’. Worst of all, I’d ‘most likely feel worse before I got better’! Oh, really? Why on earth would I want to feel worse than I already have? I listened, not so patiently. Then sounding really dumb, I blurted out “Uh, I don’t remember you telling me this, are you sure?”. “Yes Margaret, if you’ll refer to the folder I gave you, it’s all in there…”. I immediately set my eyes on Mike, and mouthed the words, “Did I get a folder?”. Mike calmly walked over to a stack of papers on my side of the bed and pulled out said folder waving it in the air. Where was I when I received this? My brain was not laying down memories because of all the stress.

I quickly apologized for bothering her and was told to ‘Call anytime, and reminded me she was a teaching professor, just leave a message. She’d return my call as soon as possible’. She assured me I wasn’t ‘losing’ my mind at all, that my brain was constantly working to accommodate during Vertigo and Nystagmus attacks. To put it simply, my brain ‘prioritized’ information. It was more important I stay erect, compared to receiving a silly folder! It was so reassuring to hear, after feeling the stares of people who didn’t know or understand my battle. Those who have fought or are currently fighting can understand this, I think.

My new routine became, well, routine. Would it be a good day or a bad day? How’s that for a routine? It boiled down to, how would my body/mind handle the day? The VRT exercises took a lot out of me, I knew I needed to take care of myself, but having a ‘caregiver’ personality wasn’t helpful at all either. I was having such difficulty ‘accepting’ this new role as a patient. Each day began with the best of intentions, but sometimes it was just too much. When I had a good day, my mind drifted to work, I missed it terribly! I’d think about calling my Supervisor with the great news of, ‘I’m coming back’! I knew my absence put them in a hard position as it was my co-workers that were picking up the slack. Then, a bad day would show up seemingly out of the blue, but in reality, I’d overdone the exercises. I felt I was on a new treadmill and wondered if I would or could ever get off.

For the first 3 months, I felt no different and maybe even worse. So when my next visit to Dallas rolled around, I have to admit I was not very nice with my physician or therapist. I came at them with all my frustration! I’m so glad they remained professional because I certainly was not acting like the professional I was. I had become the patient. I was reassured by both ‘everything was looking good’. Oh really? I didn’t feel I was making progress but they did, I wondered who was right. I decided to believe them. I was just a very impatient patient.

My PT had me do the exercises while she observed. Of course, this time, I had no Vertigo or Nystagmus as I had at home, but she noted I ‘gripped the chair throughout and swayed in a circular pattern’. My new instructions, put my hands on my lap, do not hold the chair. “Okay, Margaret why don’t you give it a try”, she said in her soft, almost hypnotic voice. She obviously hypnotized me as I gave it a try. Hands on lap, check. Eyes on ‘X’, check. I began moving my head side to side, survived that. Then up and down up and down, up and DOWN! My startle response went into overdrive as I stopped just before actually falling. I felt like a fool! “That’s wonderful Margaret, see the progress you’ve made”! Uhhh, no I don’t, but if you say so…With a big smile, she says, “See? You just have to push through it!”. I guess I had, for now…

It Was All So Black and White…

I was now two months into adjusting to my new medicines and  was pleasantly surprised that I’d had so few side effects now! My debilitating nausea and vomiting were finally under control and I was finally out of bed and moving around more. This was all done within the safety of my four walls, where I was at least, able to maneuver about my home. I had ‘paths’ from one room to the next, with either walls or furniture to touch for bearings. If I did get dizzy, I’d have the wall to slide down or a chair to flop into for safety. I’d had enough broken bones! So, just as I’m beginning to feel ‘comfortable’ in my new/old life, time was approaching for my first appointment with the Physical Therapist.

On this trip to Dallas, I felt well enough to ride in the front seat but wore sunglasses to hopefully decrease the visual stimuli, it didn’t help. I felt hyper aware of movement now! I tried closing my eyes, but it felt like I was on a boat. I tried squinting my eyes, I tried laying my head on a pillow up against the window, and I tried wallering in a seated position but none of it worked. After about one hour, I’d had enough, now nystagmus began. Time for my back seat bed! Mike pulled over and tucked me in. I put on my sleep mask and hoped my eyes would settle down and it seemed to work! I hoped to drift off for a 5-hour ‘nap’. I meditated in an attempt to find my Zen place. I could feel every tiny movement of the car, every vibration, yet I drifted in and out of sleep. As I listened to my favorite band, Pink Floyd, I honed in on the lyrics to ‘Comfortably Numb’. I identified with the lyrics and longed to be comfortably numb myself…but dang, aren’t we there yet?

I woke up in the driveway of the hotel feeling very confused. I really had gone to sleep! Mike startled me when he got back in the car, but was in such a good mood! “So you decided to wake up? I’ve been trying to wake you up for the last 20 miles”! “I can’t believe I fell asleep”, I mumbled. He drove us around to our room (1st floor, thank God!) and we began unloading our car. I don’t know about others, but Mike and I always bring our own pillows (3 each), fans, and a sound machine with us when traveling, always! We look like we’re moving in for a 1-2 night stay, but that’s how we travel. There was good food close to the hotel, but I didn’t feel like eating ‘out’, so we ate to go food ‘in’ (was my poor husband ever going to get a good steak dinner?). We nestled into bed for the night well fed and feeling content.

Morning came way too early, but after some in room coffee, I felt ready to find out what awaited me. My Physical Therapist was in the same office as Dr. Roland, so this time, when we pulled into the circle drive, we knew where we were going. The same friendly faces greeted us, offering me a wheelchair (which I didn’t use, I had Mike!), offering an escort and a sweet “Good luck!” from a group of them. ‘Do they know something I don’t?’, I thought to myself. When we were alone in the elevator, I asked him, “What did they mean by saying good luck?”. He just looked at me. “I guess they mean good luck with your appointment, Margaret. What do you think they meant?”. Maybe I was being too sensitive. The elevator ride to the 9th floor was making feel horrible, my stomach was in a knot and my heart was pounding. “Oh! Mike, I feel horrible!” as I leaned on him. Of course, this is when we arrived and the doors opened.

I must have looked pretty pitiful, as the people getting on as we exited gave me an “Awww…you poor thing…” comment. Being embarrassed was no longer an issue for me. It was all I could do now to cling to Mike as we walked the long/longer/longest hallway to her office. The first thing I was aware of in the office was the carpet, it was a horrid, multi-colored, swirly carpet! I immediately felt dizzy and asked Mike to just sit me down and go check me in. He was back quickly I know, but it felt like forever. “You’re next in line Margaret!” Mike chirps happily. I tugged at his hand to sit down next to me so he could help keep me upright. I’d pulled out my barf bag (disguised as a gift bag) and had it at the ready, just in case.

I heard my name called by a woman’s very sweet voice, as I got up with Mike in tow and headed her way. Dr. Patti Blau PT introduced herself and had the nicest demeanor, I immediately felt comfortable.  As we turned to head towards her office she said, “Oh no, Mr. Byrne, I’m going to talk with your wife for a little bit, and I’ll call you in later…”. As these words actually exited my mouth, I couldn’t believe what I said next,”I’m sorry, but you don’t understand! I don’t go anywhere without him!”. Soft laughter came from her and off we went, she walked, I shuffled along, watching my feet, and dragging my fingers along the wall. We sat down in her office/examine room/treatment area. It was a large space with an exam table, wall charts, and many, many books. She asked me about my nystagmus, how long I’d been sick and meds I now took. Then she asked me to lay on my side, explaining she’s be ‘moving my head into various positions. Some may not bother me at all while others might  make me have a response’ (nystagmus). Oh boy! Now I was really excited, NOT! I wanted Mike to be here.

The first number of positions didn’t invoke a response, could I be well? Now I had to turn over to other side and do the same thing, the first was okay, but with the next position, HERE IT COMES! “This is it, my eyes are doing that crazy thing! What do you see? What do you think is going on?”. I couldn’t seem to stop myself. My eyes felt like an old fashioned Match 3 Slot machine, they were going around and around, then it felt like they just ‘clicked’ back into place. “Oh, I’m sorry but I’m going to be sick, I’m so sorry, I’m so…” I whined. My secret barf bag was nowhere to found, I’d left it with Mike! She slid the trash can to me. My first thought was, ‘I can’t throw up in front of you!’, but yes, it seemed I clearly could.

When I was finished humiliating myself, she offered my a box of tissues and asked, “So are you ready to hear what I found?”. Seriously? “YES! What did you find?” I blurted out. “No, wait! I need Mike in here!” I waited in her office while she retrieved him. He could tell I’d been sick, I wonder if the trash can between my legs gave it away? He sat next to me, took my hand giving me that ‘It’ll be okay’ look. Dr. Blau put it all so matter of factly, “Your Posterior Semicircular Canal is affected. You have Rotational Nystagmus as a result. You’ve become a ‘floor watcher’ and a ‘wall walker’. You’ve been dealing with this a long time Margaret, but I think I can help”. I had waited now over a year to get answers and I had so many questions, but my brain was trying to process there actually WAS help!

She spent over an hour with me, answering every question I put before her. This woman knew her stuff! We discussed my therapy would be a lot of Home Programs as I lived so far away and how difficult travel was for me. She picked up a stick wrapped in black and white checkered fabric. She hung  it on the wall and I felt Mike’s hand on my back, “Where you going, Margaret?”. I was unaware that my body started leaning over as the fabric rolled down. “Oh my gosh! That print is making me sick!” I whined. Dr. Blau continued, “This will be your therapy tool. I will place a red ‘X’ in the middle. I want you to stare at the ‘X’ and move your head slowly back and forth, then up and down, keeping your gaze on the ‘X’. Ready to give this a try?”. Uh, well, NO! was what I wanted to say, but I gave it a go. Okay, I’m staring at the ‘X’ and here I go…I’m going…okay now, here I go…No, no, no! And I’m sick…”Well, that’s enough for today. I want you to do these 2-3 times daily. You should take your nausea medicine before you start. I will see you back here in one month”, she said in a chipper voice I didn’t appreciate. Had we driven to Dallas for a piece of black and white checkered fabric? I could have done this much (then why didn’t I?), but I was going to give my black and white therapy a ‘college try’. What would I have to lose?